As you read these stories, you may want to contact someone who has asked to remain anonymous.  Please send an email to editors@facial-neuralgia.org describing the person you want to contact. If we have an email address for that person, we will forward your name and email address and let them know you would like to make contact. 

Name: Steve s.
Email: soprano5@prodigy.net
City:
State:
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: Dilantin, Tegretol
Comments:
Date: 12/31/00

I am male, 38 years old, I was diagnosed 8 years ago with T. N. I went to an ear,throat,nose specialist and went through many procedures. I finally went to another specialist in the city and he diagnosed me with T N. This was three weeks later! In pain, I managed to function. My savior was gargle (lidocaine?) that allowed me to eat and talk. I lost 20 pounds because I could not eat, drink, speak, sneeze or it would cause an episode of pain to my ear drum. Dilantin was prescribed but I was allergic. Then there was Tegretol! Thank God! It solved my Problems for quite some time. I now have episodes only two times a year. Usually with a Cold and around Late December. I hate that pain and could easily put a gun to my head. I can't imagine having those tics all year. Good Luck you will find an answer!

Name: laura 
Email: tom.laura@mindspring.com
City: dallas (then PERU)
State: tx
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Acupuncture WITH Cranial Chiropractic Adjustments
Comments: 95% PAIN FREE!!!!  DON'T Do That other stuff un
Date: 12/30/00

My Story, MY CURE

On August 7, 2000, I went to get a dental check up because I was having tooth pain. After aggressive probing, no problems were found. The next night I was in the car with my husband when I was stuck with a lighting pain in may face that sent me spinning. I thought I had just been electrocuted. The pain went from my temple to over my eye and on my cheek. I could not hold back the tears.

We immediately went home. I took some painkillers and tried to sleep. The next morning the pain increased. My face felt like lava steams were pouring from my temple. Suddenly the same side of my face turned bright red and swelled like I was having an allergic reaction. It was as though someone had drawn a line down my face and painted the right half red. My husband and I thought I was having a stroke. Thankfully the redness soon went away. We called a family friend who was a Chiropractic Neurologist. Based on the symptoms we were able to rule out a stroke, but he had me immediately see my general doctor in the morning. He suspected something called Trigeminal Neuralgia.

Upon going to the Doctor, I was given VERY high doses of steroids and told to give it time. They suspected the dentist damaged my Trigeminal Nerve and confirmed what the Chiropractor suggested. (The steroids did nothing but make more give me what was called steroid rage and aggressive weight gain.) That day I was struck with even more severe pain. I thought I was going to die. I truly thought I was having an aneurysm or had a brain tumor. My head felt like an explosion had just happened. I spent hours in the dark with ice on my face, had taken painkillers and still nothing helped. When I told an MD how I felt, his response was, “ Oh come on, you are exaggerating.” This was the kind of blind ignorance I was running into at every turn.

My husband was beside himself, he was helpless and this was devastating. He was gently touching my face as if to heal it, but nothing worked. Days went by, then weeks, more steroids, painkillers and doctors. I missed days and days of work and when I actually showed up I looked like a Mac truck had hit me.

Then my Chiropractor sent me to see a Neurologist MD and he sent me in for an MRI with contrast and a lot of blood work. This was to rule out MS, Lupus, Brain Tumor and many other dreaded diseases. After the results came back the ruled out all of the above and ruled in Trigeminal Neuralgia as a definite diagnosis. He wanted to treat it with anti seizure drugs that are usually used for Epilepsy. This would be taken for life. The medicine would make me tiered, not able to work as I currently had and basically strip my life even as the TN had. At the age of 31 I was not ready to give in to this as a life disease. Prior to this, my husband and I were planning to move to Peru and all plans were on hold until we knew my future. My Neurologist told us that people commit suicide over this. The pain is simply intolerable. We had to find an answer.

My husband found one.

He read on the Internet in a little article that said that acupuncture and chiropractic combined has seen wonderful results. SO we went to a friend of my husbands who had practiced acupuncture for 20 years in China and recently moved to the states to become a Chiropractor. He wanted to see me immediately 3 times a week. He adjusted my first cervical vertebra to stimulate brain and nerve function, and acupuncture was to help work together with the specific chiropractic adjustments. Don't worry. If you can handle TN you can handle a few needles and an adjustment. No Problem! It had been 2 months of pure pain. We had two weeks of sessions and I did not feel much improvement, but I was not giving up on it. Then suddenly, I left a session, and I noticed some of the tingling felt different. I didn’t say much that night because I didn’t want to jinx it. Then the next morning, I woke up without the painful headache and brushing my teeth no longer hurt. I had tears in my eyes. I ran and told my husband. The episodes went from over 20 a day to under 6 and I was headache free for 4 days in a row. (That was a first). It just got better…. Just after 5 weeks of treatment, I am 95% symptom free. I am better than before, because I no longer take feeling good for granted.

Each day I feel good I feel blessed and I must tell everyone about his. I cannot let people think they must take those drugs for life or have horrifying brain surgery. THERE IS AN ANSWER. FIND SOMEONE WHO CAN HELP YOU. DON’T GIVE IN.

We are now living our dreams and moving to Lima, Peru to celebrate life. It was almost taken from us. Now we are going to give back all we can.

If you need to reach me or want to learn more PLEASE find me. Our current email addresses are:

Tom.laura@mindspring.com

Or MyersinPeru@hotmail.com

Please don’t give up.

Love, Laura Myers

Name: Alexis
Email: alexiskristine@yahoo.com
City: Atlanta
State: GA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin
Comments: I need advise. I'm trying to deal with it the best I can.
Date: 12/30/00

Hi! I'm 28 and just recently been diagnosed. Please excuse my spelling. I have had all the symptoms of Trigeminal Neuralgia for three or more years before. I always thought it was a tooth ache or my sinuses (or so my doctors have been telling me) I was diagnosed with so many "sinus infection" that it was insane. It was the only thing that they come determine that the pain in my face was coming from. I just had sinus surgery hoping that it stop the serve pain attacks and it did till I was off pain meds. from the surgery. Finally the doctor told me that I had TN. I cried because I could not image never getting over this. My doctor gave me Neurontin to take and the attacks stop till recently. I have up my meds and been to the emergency room twice due to serve pain. My pain is all on my right side of my face. I am unable to touch my face, side of my head and my ear. I also have pain right under my chin. just like everyone I shape shooting pain and strong throbbing pain until the episode is over. The worst episodes seem to happen at night...is this common?? If it does happen during the day I am very sensitive to sound and some times light. Does anyone have these same symptoms? Can you offer any advise to me that can make the pain less severe during an attack? I am not sure what else I can do. Please help if you can? Thank you ..alexis

Name: "Hotdog"
Email: ahotdog@msn.com
City: Knoxville
State: Tn
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Gamma Knife
Comments: Great
Date: 12/23/00

I have Trigeminal Neuralgia for nine years, it started as occasional pains, and became more frequent with longer duration each time. I was lucky, in one respect, it only took two visits to the doctor to be diagnosed correctly. First time he gave me an antidepressant. Because the pain was getting really bad by then, I asked him , how long will it take this to work. His reply was, two to three weeks. I said to myself, I don’t know if I can stand it that long. So I go home and begin taking the medicine. That night the pain came and stayed, it was in my mouth, I could not talk, eat or move my tongue. I was up walking the floor and screaming without closing my mouth, so glad my husband was on night shift that night. I was waiting for the doctor when he arrived at his office the next morning. This is my statement to him: If you can’t help me I’m going to the dentist( I had recently had some dental work done), if he can’t help me I’m going to the hospital, if they can’t help me I’m going to kill myself. The doctors wife, who was his nurse, said, Oh, don’t say that. I told her I was very serious. I was prescribed Tegretol this time, 100mg twice a day. But I’m still not happy, so I go to the dentist who shots me up with Novocain. Yes, now I have no pain. I stop at Burger King or one of those places and get a burger, kind of tough to eat with no feeling but Oh, so good. The Tegretol worked but I had to stay home from work a week because of its side effects. I felt numb and dizzy and weird. I had one remission that last for eight months, than it came back with a vengeance. Than I had to get adjusted to the medication all over again. 22

Over the years, I have increased the Tegretol until I am currently taking 12 to 14mg a day. Okay, back to two months ago, One morning I rubbed my eye and the pain hit, for six weeks I could not touch the right side my face. I have Trigeminal Neuralgia for nine years, it started as occasional pains, and became more frequent with longer duration each time. I was lucky, in one respect, it only took two visits to the doctor to be diagnosed correctly. First time he gave me an antidepressant. Because the pain was getting really bad by then, I asked him , how long will it take this to work. His reply was, two to three weeks. I said to myself, I don’t know if I can stand it that long. So I go home and begin taking the medicine. That night the pain came and stayed, it was in my mouth, I could not talk, eat or move my tongue. I was up walking the floor and screaming without closing my mouth, so glad my husband was on night shift that night. I was waiting for the doctor when he arrived at his office the next morning. This is my statement to him: If you can’t help me I’m going to the dentist( I had recently had some dental work done), if he can’t help me I’m going to the hospital, if they can’t help me I’m going to kill myself. The doctors wife, who was his nurse, said, Oh, don’t say that. I told her I was very serious. I was prescribed Tegretol this time, 100mg twice a day. But I’m still not happy, so I go to the dentist who shots me up with Novocain. Yes, now I have no pain. I stop at Burger King or one of those places and get a burger, kind of tough to eat with no feeling but Oh, so good. The Tegretol worked but I had to stay home from work a week because of its side effects. I felt numb and dizzy and weird. I had one remission that last for eight months, than it came back with a vengeance. Than I had to get adjusted to the medication all over again. 22

Over the years, I have increased the Tregretol until I am currently taking 12 to 14mg a day. Okay, back to two months ago, One morning I rubbed my eye and the pain hit, for six weeks I could not touch the right side my face. I went to a Neurologist, he told me about the Gamma Knife Surgery. I had this procedure done the 29th of November, at the Medical Center of Ga., in Augusta, Ga. It has been almost a month and I have had no pain. I am getting excited about decreasing the tegretol. I can start lowering the dosage in six weeks. The procedure is non invasive, there is no pain, a little discomfort, I would recommend this to everyone.

Name: Claramae 
Email: ctlookitup@aol.com
City: Hannibal
State: NY
Country: USA
Diagnosis:: Trigeminal Neuralgia
Treatments: Balloon surgery,12/92,11,97,&11/2000; Gamma Knife 5/2000
Comments: Balloon surgery gives wonderful relief for a time. Thank God I am living in 2000. . . just fifty years ago I think I would have killed myself by now!
Date: 12/19/00

It does make one wonder just why we have these infernal trigeminal nerves that go crazy...and I, at least, gave up trying to relate the onset to anything. The disease is a very isolating one as other people just can not relate to the severity of pain. Pain started in 1985 in bursts of pain, lasting only moments...and followed death of husband at 45 and therefore loss of business, home and my need to find employment at age 50! One isn't usually well insured when you are self-employed, parents and "just making it". To be candid, I am, just the same, a very happy person, a "health-nut", lung cancer survivor, parent of wonderful and successful children. I had reached beyond a toxic dose of tegretol in 1992 when I learned of balloon surgery which through a probe compresses the ganglion to the trigeminal nerve and slows its "craziness"...this is, of course, putting it very simply. These were performed in University Hospital and Crose-Irving in Syracuse, New York...in 1997 and again in 2000.

Name: Lennan 
Email: lmdesigns@ns.sympatico.ca
City: Halifax
State: NS
Country: Canada
Diagnosis: Glossopharyngeal Neuralgia
Treatments: anti-depressants, heat, tylenol, muscle relaxers
Comments: pain in the neck"
Date: 12/17/00

I am forty years old, and have had GN since I was 13. When I had my first shock/bolt in my neck I thought someone stabbed me with an ice pick. I have tics about once every 60 days or so, but I did not know until recently what they were. I tried physio, chiro, orthodontics, back doctors, yoga, acupuncture, GP, and many types of pain relievers to no avail. Lately, I have been to see the orthodontist and he has put braces on my teeth because of TMJ, but I think the residual pain is from the GN/TN, because it radiates from the nerve in my neck and the base of the skull to my jaw on the left side. The pain never goes away. I have yet to try some of the medication that has been recommended in your stories. I find that heat works well, and sometimes a cold pack, however strenuous tasks can sometimes trigger a tic. I have had xrays done on my neck and they are normal. I am depressed a lot of the time, and find it difficult to manage the pain when it is bad. The pain is getting worse in my neck and is starting to tingle down into my shoulder and arm, into my fingers on one side (left). I will update you when I see the neurologist

Name: Ira F.
Email: airira@spiritone.com
City: Portland
State: OR
Country: USA
Diagnosis:: Atypical TN, Atypical Facial Pain, NICO, TMJ
Treatments: Gamma Knife, Oral surgery, TMJ treatments, lots of drugs
Comments: This may be a controversial comment but I believe that many facial neuralgias are infectious in origin, bacterial or viral.
Date: 12/16/00

I was originally diagnosed with Trigeminal Neuralgia in May, 1994, but the medicine I was given (Baclofen) did nothing for me so my (then) oral surgeon and I reverted to a diagnosis of TMJ for which I went through a long set of treatments, including bite splint, massage therapy, TENS unit treatments, diet changes, etc. This effectively did nothing and I steadily got worse. On a pain scale from 1 to 10, I was regularly a 30. 

Then I researched the net till I realized I might really have TN. I went to my regular doctor, asked for Neurontin, an appointment for a neurosurgeon and I used that appointment to lobby for a Gamma Knife radiation treatment. This was done in December of 1998 in Seattle, Washington by Dr. Ronald Young. However, this ultimately produced nothing. I had about 5 months of relief beginning six months after the Gamma Knife. 

So by November of 1999 I was getting pain again in my face and teeth and gum -- all on the left side. I went back to the net and started reading up on all the areas of facial pain I had previously ignored. Well, not ignored, just skipped over because I thought them not pertinent to me. I discovered www.maxillofacialcenter.com, the web site of Dr. Jerry Bouquot, who has written extensively about NICO. I also read about NICO on Dr. Shankland’s web site. 

Armed with all the info I needed I went about trying to get an oral surgeon who would help me. I spoke with Dr. Bouquot on the phone and learned that almost no US oral surgeons even believe NICO exists, much less be willing to operate for it. I went through just about every oral surgeon in the Portland, Oregon metro area. Most would not even see me. One gave me a whole battery of tests which actually revealed the NICO lesion, but he refused to operate to do anything about it. 

Finally I consulted with a maxillofacial surgeon in my area who specializes in oral cancers and facial reconstructions. He looked over the bone scans and MRIs and dental xrays and agreed to try to help me. We used the standard protocols for uncovering NICO, as designed by Dr. Ratner in New York. This is a series of anesthetic injections to see where the infection may lie. Eventually I convinced him to operate even though we both thought the odds were against finding anything substantial. 

In June of 2000, I had full anesthetic surgery in a hospital setting for what was described as nerve decompression surgery. However, during surgery it was discovered no nerve was being compressed in my jawbone. Instead, just where I predicted and right where the dental xrays showed, there was what was described by the surgeon as “watery bone mass” inside the jawbone. Basically, a condition he termed mandibular osteomyelitis, but which I believe was NICO.

Post-surgically I was given NO antibiotics. This proved to be a mistake as the pain quickly came back. Finally I convinced my surgeon to give me antibiotics and I have been on Clindamycin for a month and a half. I am completely pain free and except for a minor twinge now and again, I am fully recovered. But it’s been nearly 7 years.

If others are interested in my solution to my facial pain problem, please feel free to email me at airira@spiritone.com. Also, for those interested, there is a much longer, more complete version of my journey through ATN/NICO in the TN-L archives under the title TN Wars -- Parts 1 thru 5.  You must join TN-L to access the TN-L archives.

Name: "Linda"
Email: gilmatthias@nwinfo.net
City: Yakima
State: wa
Country: Yakimawawa
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Tegretol and neurontin
Comments:
Date: 12/15/00

I have been diagnosed with trigeminal neuralgia. I did not have pain with neurontin and celebrex for about 2 months and after not taking the medicine for a few weeks the pain came back so severely that it would send me to the floor a few times every hour. I could not ride in cars or go outside. My doctor switched me to Tegretol after neurontin did not work the second time. It was only 300 mg and did not relieve the pain. He finally increased it to 600 mg. and after 3 weeks the pain stopped. In fact it stopped the exact day my husband was diagnosed with throat cancer. That was 7-8 weeks ago. The side affects were dizziness, short attention span etc. They have subsided except I cannot walk in the cold or exercise. It seems to irritate the nerve. I used to be very athletic and active. I believe that the MVD procedure will restore my life. Surprisingly, I have a friend who is drug free who had it and said it took her 1 year before she could get off the meds. I'm very grateful the pain is gone but is there anyone who had the MVD surgery and found the pain worse. I'm terrified of the pain and making the wrong decision. I am trying to decide who to see for the surgery. Has anyone been a patient of either Dr Horowitz, Berchiel, or Jannetta? Please tell me your experience. Linda

Name: LISA K.
Email: LISA8673@YAHOO.COM
City: BILOXI
State: MS
Country: USA
Diagnosis:: Trigeminal Neuralgia
Treatments: TEGRITOL, DILANTIN, TOPAMAX, NEUROTIN
Comments: FINALLY I DECIDED TO HAVE THE JANNETTA PROCEDURE DONE TO RELIEVE MY PAIN
Date: 12/13/00

HI, I HAVE HAD TRIGEMINAL NEURALGIA FOR OVER 2 YEARS. I HAVE TAKEN TEGRETOL, TOPAMAX, NEUROTIN, AND DILANTIN BUT NOTHING HELPED THE PAIN. MY PAIN WE LAST FOR ABOUT 3 MONTHS AND THEN GO INTO REMISSION FOR ANOTHER 3 MONTHS. FINALLY, NOV.30, 2000 I WENT TO TULANE UNIVERSITY IN NEW ORLEANS FOR THE MICROVASCULAR DECOMPRESSION- JANNETTA PROCEDURE. THEY FOUND A VEIN WRAPPED AROUND THE TRIGEMINAL NERVE SO TIGHT WHEN REMOVED LEFT AN INDENTION IN THE NERVE. ALSO, THERE WERE SOME DEPOSITS ON THE NERVE THAT HAD TO BE REMOVED. TODAY IS DEC.13, 2000 AND I FEEL GREAT AND WILL GO BACK DEC. 15 TO HAVE THE STAPLES REMOVED.

SINCERELY LISA K. BILOXI

Name: "AUD"
Email: Private
City: palm city
State: fl
Country: us
Diagnosis: Trigeminal Neuralgia
Treatments: CARBAMAZEPINE
Comments:
Date: 12/09/00

I AM 37YRS.OLD RUN 5MILES EVERY OTHER DAY ON OFF DAYS I LIFT WEIGHTS. I AM IN GOOD SHAPE. DON'T EAT THE BEST WHO DOES HAVING 2 CHILDREN. ANYWAY, I WOKE UP 1 WEEK AGO WITH PAIN AND TINGLE IN THE LEFT SIDE OF MY FACE AND AS THE WEEK WENT ON IT PRECIDED ON OVER MY EAR TOP OF HEAD,THROAT. MY QUESTION IS THEIR ANYONE ELSE AS YOUNG AS ME? I HAVE NEVER HAD ANY CHILDHOOD ILLNESS AND NEVER BEEN ILL. AM I LOOKING AT SOMETHING THAT WILL BE WITH ME WAY IN TO MY FUTURE? THANK YOU!

Name: alison m.
Email: richardm@intercoast.com.au
City: sydney
State:
Country: australia
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol 800mgs
Comments: works until I lower the dose so I can think straight.
Date: 12/07/00

I am 43 live in Oz with 2 Autistic girls.I had TM dxed as ENT infection from 29/10-1/12/00. I'm on 800mg Tegretol as pain is so extreme I can't think or function. I teach full time from home. I 'd love some email pals. Tegretol is the only thing to deaden the pain but I hate taking so much-I know you all understand.

Name: Sindie 
Email: sindie@frontier.net
City: 
State: 
Country: 
Diagnosis: Grave's disease
Other:
Treatments: bilateral orbital decompression
Comments: Nothing has ever helped if anything has made me worse
Date: 12/06/00

Hi- I had bilateral orbital decompression for Grave's disease in June of 2000. My teeth are so very sore since then and have facial soreness and pain. I am taking Neurontin, my surgeon is unsure if this will improve in a year or if I will have to learn to live with it. Please, if there is anyone out there that has had this bone removal of the orbits of the eyes, write to me. I need to talk to someone! Sindie 

Name: Sandra 
Email: zalipski@infinet.com
City: Lancaster
State: OH
Country: America
Diagnosis: Atypical TN,  Atypical Facial Pain, NICO
Other:
Treatments: MVD Surgery, Glycerol Injections, Many facial Blocks,so many procedures in the last 11 1/2years
Comments: Nothing has ever helped if anything has made me worse
Date: 12/06/00

I have had CHRONIC FACE PAIN for 11 1/2 years.I have been diagnosed with Atypical Face Pain, Atypical TN, and NICO. I had the MVD surgery in Pittsburgh,Pa. Did not help. I had Glycerol Injections Was made worse my left side of face drooped like i had had an attack of Bells Pals, eventually my face went back to normal. I have had many many facial nerve blocks, pain still there. I am on pain medicines which help some but the pain is always there. I am in a 4 week bad episode now do not know how much more i can stand, the pain is worse now than it has ever been (if that is possible. PAIN stays at a 5-9 on a scale of 1-10 I tell the Dr. it has never been a 10 because i know i would die from the PAIN. I hate this DEMON that has destroyed my life. My whole life revolves around the PAIN and in the winter i can not even stand to go outside. I can hardly wear my glasses now as the left side of my nose is 1 of the trigger points. insurance will not pay for LASER surgery to correct my eyes so i would not have to wear glasses (they say it is cosmetic not a necessity) yet they know I am on disability and they have to pay for all meds. and Drs. Can't figure that one out!!!!!!I have been to 2 well known PAIN Clinics (a waste of time and money for me) I have been to a Chiropractor, at this point i have ran out of things to try if anyone knows of anything else to try please let me know. Thank-you and may GOD BLESS you all. A Friend in PAIN-- Sandy

Name: "Countrygirl"
Email: Private
City: Blossom
State: Tx
Country: U.S.
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin200mg
Comments: This story is about a person that is very important to me
Date: 12/02/00

The person that I am writing about is very close to me and I know what she has gone through for three years. I know that there is nothing I can do to help , but be there for her . She had surgery about three years ago and she told the doctors that there was something wrong with her face . The doctors did not listen to her and now she is losing the feeling in the upper part of her face. There is a doctor that just came to our town and listens to his patients . He told her that the doctor that did her surgery cut the seventh nerve in her neck and that it is going up into her and killing all the other nerves in the right side of her face. He put her Neurontin three times a day and she does not have the pain in her face as bad as she had. She knows that she may have take it the rest of her life, but it does not manner to her. I am very a her because you see the person I am talking about is my mother. She just loves a lot of people and we do not think she know how much she means to us

Name: Lisa
Email: golden1_172@yahoo.com
City: Nashua
State: NH
Country: USA
Diagnosis:  Atypical TN, Atypical Facial Pain
Treatments: Oral Surgery, Pain medication
Comments: I have not been officially diagnosed yet.
Date: 11/28/00

I am 33 years old. It all started in March 2000. I went to my "then" family doctor to talk about a pain in my lower left jaw. Severe pain, which all three doctors in the office dismissed as "all in my head". When I insisted that I could not cope, they said it could be a "stone" in my pituitary gland. Told me to suck lemons and with reluctance gave me some pain medication. They said I could become addicted so easy. They scared me even more. The pain did not go away, in fact it got worse. They referred me to an ENT. He said it could be a TMJ disorder. He sent me to an Oral surgeon. The Oral Surgeon thought it was an infection. At this point the pain was along the entire left side of my head, mostly in my lower neck, ear and jaw. I did have my wisdom teeth out in 1997. All four were severely impacted. I had every complication you can imagine. Infection, dry socket, the whole nine yards. So, this oral surgeon said, he would operate and biopsy every thing from the tissue to the bone for infection. He put me on some antibiotics and pain meds. Well, needless to say, after all that, nothing changed. The pain was the same and some times worse. The family doctor said, "sorry, it's in your head, see a therapist and they refused to help me" I took the bull by the horns and called the teaching hospital in New Hampshire. There had to be some one who could help me. I went to see an ENT and he BELIEVED ME!!! He sent me to see a rheumatologist. This doctor was GREAT. He performed every test you can imagine. CT Scan, MRI, blood test. He ruled out all major diseases. He told me, try a neurologist and to let him know what I find out. I went to a NEW family doctor. He said a Neurologist is a great idea. He thought it could be some kind of Neuralgia. That was when I found this web site. I searched on neuralgia and I read every thing I could find abut it. I swear I wrote every thing here. What a relief to find out what is wrong with me. I'm scheduled to see the Neurologist in January 2001. In the mean time, I'm taking Vicodin. Which doesn't help a lot, but it keeps me functioning. I can not tell you how much this web site has helped me. I, like a lot of you, have felt like suicide was the only answer. No one believed me at first and the pain was so very real to me. Thank you all for listening and sharing your stories. I'm looking forward to the true diagnosis and a plan to help me. Maybe some day I can feel like "ME" again.

Name: Carmen
Email: cehlers@wabeno.k12.wi.us
City: Townsend
State: WI
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Carbutrol/Vicoden
Comments: Got a rash from carbatrol/Vicoden made me nauseous
Date: 11/28/00

I've had this for about 3 months, but it wasn't real intense until about 2 weeks ago. My doctor put me on Carbatrol - I got a rash and chills from this so she took me off and I have been taking Vicoden for a weeks. I was taking Aleve with the Carbatrol and they thought this is what caused the rash and chills. So when the rash was completely gone, she put me back on Carbatrol and told me not to take the Aleve. I took one last night and got itchy and picky and the chills. So I am going to call her today to see what else she can do. I would like to hear any positive stories - I've read a lot of negative things and need to know if anyone has beat this thing. Thanks. Carmen

Name: 2sassy
Email: Private
City: pine knoll shores
State: nc
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol, neurontin, baclofen
Comments:
Date: 11/23/00

well, i woke up with trigeminal neuralgia on jan 11, 1995..it was not as bad in the beginning, but within a couple of months, it was unbearable. i run a property management company that rents condos on the beach and i talk on the telephone the entire day. i was often in sheer agony and apologizing to the people on the phone for the strange way i tried to hold my mouth so i could talk. the letter "s" i have learned to fear. well, it took four months to diagnose and i was told i was a text book case. tegretol helped immediately..but over the years it has gotten worse and worse. i have gone from 400 a day to 900 (400 tablets and a 400 extended release). last year at this same time of year, i literally cried my way, bent over, into my doctors office and begged for something. i now take neurontin. no help..it just made me incredibly stupid. and i would be at the computer and my left hald would just fly off and vibrate. i would have muscle spasms that would cause my arms and legs to jump around. i took my sister to charleston for my bithday and in spite of her constantly warning me that i wasn't alert, i turned right into an 8 lane traffic pattern going the wrong way. four lanes of traffic patiently waiting til i backed up and corrected the car. from then on, she drove and i came off neurotin. i am only 5' tall, 105-108 lbs. i don't think they consider your size when they load you up with this stuff. i was told to start with 6 neurontin then 5, 4 3, and stop when it helped. it helped at 3 and i was an painless idiot. yes, i have thought about suicide, i think a lot of us do, but that is just not realistic. we are living with the pain and we can live with the pain. i don't know how so many have to have so many different treatments for one problem but at least there are methods that help for awhile. i am in a full episode now and have been for two months. i am depressed but i am aware of it. i am bitchy, but i am aware of it. don't lose sight of yourself and don't let it turn you into someone else. stay aware of what is happening to you and when you find yourself becoming like that, re-direct. it's just pain. you are still you. and hold on. good luck to every one of you. i hope you find relief.

Name: Barbara
Email: arkiewife@aol.com
City: South Bend
State: IN
Country: United States
Diagnosis:  Atypical TN,  Migraines
Treatments: 4 rhyzotomies, 2 nerve blocks, an mvd, gamma knife, numerous meds.
Comments: Please feel free to write to me and talk with me.
Date: 11/19/00

My experience started out after having a wisdom tooth removed. I got dry socket and an infection. I went to my neurologist and mentioned to him that the left side of my face had started to get a pain going up and down it. He thought at first it was just an infection in the nerve and started me on, I don't remember the med., but that did not work. After a month the pain intensified to a point where he knew what it was and told me that it was probably trigeminal neuralgia. He sent me to a neurosurgeon in our home town. This was scary. He confirmed the diagnosis and started me out on tegretol and vicodin for the pain. We kept upping the doses until I almost got relief, but by that time I was falling down like a drunk. Once we cut back on that, we decided to start working on the nerves themselves. We started out doing a balloon Rhizotomy, the first one didn't work so 2-3 wks later we repeated the process. When this gave me no relief only more pain, we decided to do a glycerol Rhizotomy. That didn't help either, but we repeated the process again 2-3 weeks later. My doctor decided that maybe a nerve block would help just to see if maybe we could just block it. So we used a phenol nerve block by injecting in into the nerve right into my face that didn't work so we repeated it again three days later. That failed also and by that time we could not use anymore of the procedures that we had used before. It was time to finally take me to the OR and to an MVD. We had been trying to stay out of that route because I didn't show the typical signs of TN I had ATN and the doctor was afraid that if he opened me up he wouldn't find a problem and I would still be in a lot of pain. We did the MVD and we found an artery compressing a nerve right at the base of my brain stem. Once we fixed that problem, we thought that would be the end of it. By this time I was taking oxycontin and percocet for the pain and it was not working. I had a good 8 months of no pain when it came back. They put me on higher doses of Tegretol, xanax, nortiptyline, percocet, oxycontin 80 mg. and topamax. Nothing was working. So we decided to try the Gamma Knife procedure. I had that done 9/19/00. We do not know the outcome yet as it can take up to three months for it to work. But I am in worse pain that what I was when I started. My medicines are now changed again to Percocet, oxycontin 80 mg., trileptal, topamax, xanax, and nortriptlyne. I might be forgetting one, it seems my life revolves around taking my medications. I know how each of you feel and at times I feel so isolated from the rest of the world. I lost my job because of this illness. My employer fired me because I was sick. I was told I could come back if my health got better. But who would want to hire someone like me? Please feel free to write I do not mind talking to others like me. It's nice to know I am not the only one out there. Thank you for listening to me. P.S. My eyes turn black with my pain, so it looks like someone has been beating on me, my husband gets such dirty looks and he's so great about helping me through this. Imagine having to watch someone you love hurting like the day after day with no light at the end of the tunnel. God Bless you all and I hope that at least one day each of you get the help that you all deserve.

Update( 02/12/2001):  I had the Gamma Knife done, nothing has changed, I have had to go on morphine and higher doses of pain medications.  Now we are considering trying to file for disability since I cannot work a full time job.  I will never tell anyone to not try anything.  I am no worse off for trying the Gamma Knife, it was a risk I had to take.

Name: kev
Email: Private
City: San Mateo
State: Ca
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: realigning facial structure for relief
Comments: over 14 years without diagnosis
Date: 11/17/00

I may write a book so people don't have to suffer needlessly. Not until I found a DO, doctor of osteopath, was my condition diagnosed. I was literally crancked in a clockwise direction, as was stated so dramatically, how did I stay out of a pyscho ward. What you need to know now is that you must seek help from an osteopath. I am now working with the osteopath and a dentist of his choice for proper realignment. You must think about your past history and especially dental trauma, which may have caused the beginning of a shifting within your mouth, in my case over a 30 year period, whereas I have compressed the nerve on one side and stretched it on the other.

more later ps. I was thrown out of my home, accused of being a drug addict, accused of nothing being wrong, seen over 30 or 40 doctors, been yelled at by doctors, (due to third party accusations), spent all my money on this health issue, and the list goes on and on. I have no idea how I will survive monetarily. Kev

Name: Dee
Email: deegordy@hotmail.com
City: Atlanta
State: GA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol
Comments: Is there any treatment that won't hurt my baby?
Date: 11/17/00

Recently, I had gone through one of those in-home tooth whitening procedures that takes a couple of weeks and noticed some sensitivity in my teeth, but I never thought anything of it because the dentist said it would probably happen. I still don't know if somehow it had an effect on me that would trigger this condition. Later, I started having symptoms that resembled a little tooth sensitivity, then it felt like a really bad toothache, but the ache got progressively worse. After taking medicine that did not ease the pain I visited my dentist who did not find any dental problems. He did xrays and some other tests and recommended that I visit my physician who confirmed that it was trigeminal neuralgia. In August of 2000, I was diagnosed with this disease and it has been a very depressing ordeal. My doctor immediately prescribed Tegretol, and an MRI. The Tegretol helped lessen the severity of pain after a few days and the MRI showed nothing abnormal. I have also tried phenytoin which did not help at all. In September, after finding out that I was pregnant I had to stop taking the Tegretol. My neurologist then prescribed Tylenol with codeine stating that that was one treatment that would not hurt my unborn child. It really doesn't help me at all. When I take it, I can usually get a few hours of sleep before the pain wakes me up again. She has also suggested an alcohol block injection. I am a bit skeptical about that because I don't have much information about it. Everything that I have heard and read speaks of how painful an experience like that is too, and many times with no relief. I am in constant pain, and the right side of my face swells and I can barely open my mouth. I have trouble speaking have had some miserable episodes that last for 4 or 5 days at the time where the pain is almost unbearable. What can I do? Is there any treatment out there that will not cause harm to my unborn child. How does this disease affect my baby? I am coping the best way that I can, but this disease and the pain alone is extremely stressful. I don't know if I can endure an entire pregnancy like this. I have so many questions about this disease and I would appreciate any help that anyone could give me.

Name: Alice
Email: ahotdog@msn.com
City: New Market
State: TN
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, etc.
Comments: Nothing helps anymore
Date: 11/14/00

I am very gratful for this site, I could find no information about Trigeminal Neuralgia anywhere. My doctor only told me there was no cure an put me on Tegretol, 200mg a day worked for awhile, than 400mg. Now 8 years later I am taking 1600mg a day with break throughs common as twice a week. I am still going on with my life but it like pulling a wagon up hill all the time. I am planning on having the gamma knife surgery and would be very happy to hear from anyone that has had this done, or has any information about it.

Name: Gina W.
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: 7 Months! NO PAIN!
Comments: Still On Trileptal 
Date: 11/09/00

Hello Brave and Wonderful People: I am honored at all the mail I received from some of you. Yes! My mom is STILL on Trileptal and it is working like a charm! NO PAIN! Nothing! What a blessed 7 months it has been! After her being diagnosed 4 years ago with TN after having dental work, and a bridge put into the upper right side of her mouth. That began the nightmare called "Trigeminal Neuralgia." I would like to say a few words to all of you considering these questions are often asked to me. PLEASE! If the doctor your seeing is NOT encouraging, GO SEE ANOTHER DOCTOR! God gave us all a gift called "intuition." If your intuition says that this man is not helping you GO AND SEE ANOTHER! Thank God I listened to that "gift" and my mother is NOT SUFFERING any longer! The doctor we had did nothing but put our family through hell and almost killed her. Thank God I listened to my intuition and went to a Neurologist in Manhattan. This man who is a miracle worker, Dr. G. Gopinathan, put my mom on this prescription. 2 150mg of Trileptal in the am 1 10 mg of Prozac in the am 2 150mg of Trileptal in the pm 1 10mg of Baclofen in the pm. And it working! SHE DRIVES, EATS, SLEEPS, BRUSHES HER TEETH, CHEWS, SNEEZES, COMBS HER HAIR, PUTS ON MAKEUP, AND EVEN GOES OUT IN THE WINDIEST OF DAYS WITHOUT FEAR ANYMORE! Please! Get another opinion, and another! Until your heart is at peace! Don't EVER give up! God Bless you all. Love, Gina

Name: Aud
Email: aba5aba@home.com
City: Secaucus
State: NJ
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Microvascular decompression, Gamma knife, neurontin
Comments: Still suffering
Date: 11/06/00

My story starts three generations ago (or possibly more) when my Grandmother got TN. The treatment available to her at the time was alcohol injections. They were successful for a few years and then had to be repeated. These shots were excruciating. My Aunt got TN as a teenager (which is extremely rare I am told), about the same time as her mother (my Grandmother) but the alcohol injections didn't work for her, and after many teeth were pulled, she had her nerve severed (as I am told). Then my Father got TN in his sixties. He tried acupuncture, which seemed to help him for quite a few years. When it stopped helping him he had laser surgery in Gainsville, FL. At that time (about 25 years ago) he had to be awakened during the surgery in order to ascertain if the right nerve was being severed. In order to awaken him they hit his jaw so hard that he couldn't eat for six months. This surgery left him with no feeling in his forehead and problems with his tear ducts on that side of his face. He is now 90 years old and still numb on that side of his face. About 10 years ago he started to have twinges of the TN pain again. He was put on Baclofen, and has been fine since. He is still on a small dose of the medication.

In my late 50's I went to the dentist with what I hoped was a tooth ache, as I was terrified of this getting illness most of my life. To make a long story short, I found that I too had TN. I too went to an acupuncturist for a few years, and he helped me (or these bouts didn't last for more that a few weeks on their own. I will never know which it is) After some years I realized I had better go to a neurologist as the pain was not going away. He put me on neurontin (after I had adverse reactions to Tegretol and Baclofen) and when it didn't work, he kept increasing the dosage till I was taking 3600mg. I still was in pain, unable to put my lips together to speak, brush my teeth, or eat. He finally said I should see a neurosurgeon. I was in terrible shape by then, and when the surgeon explained my surgical options, I decided on microvascular decompression, as I believed that this was the best way to get rid of this disease once and for all. Something happened during the surgery, and when I came out of the anesthesia, I had no balance at all. I couldn't even sit up in bed. After about six weeks of recuperation, I was able to walk, but with the need of a great deal of concentration so as not to fall. I had many months of rehabilitation at the Rusk Institute in NY I was told that I no longer have a balance nerve on my right side. This seems to be an unheard of side affect of this type of surgery. My balance is about 90% returned, but don't ask me walk a straight line as I cannot do it. My doctor told me that what he found when he did the surgery, was that a vein had attached itself to the nerve, and that the artery did not appear to be touching the nerve. He put a sponge in to separate it anyway just in case, and removed the vein.

The pain went away, except for a few occasional twinges. Eleven months after the surgery it returned, worse than ever. I went back on the neurontin, back to the 3600 mg., and again it did no good. After much discussion, we decided to try the Gamma Knife procedure. It will be 12 weeks tomorrow that this procedure was performed. The pain is still with me. I was told it could take as long as twelve weeks for this procedure to work. I am giving it 15 weeks. If I am not well by then I have no idea what to try next. Does anyone have any suggestions?

Name: Joe
Email: JNapoleone@aol.com
City:
State:
Country: USA
Diagnosis: Atypical TN
Treatments: Amitriptyline
Comments: little better
Date: 11/04/00

Recently diagnosed with atypical tn although I do not get a lot of electrical shock like jabs, I get more tingling on the right side of my face, as well as the jolt of pain that can come out the blue thank god, not often. taking 50mg of amitriptyline seems to work, but makes me feel drowsy. sincerely,J.N.l

Name: donna
Email: dsremax@aol.com
City: St. Pete
State: FL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: neurotin 3x a day 3oomg.
Comments: pain severe.....
Date: 11/04/00

My tn started on the way home from a vacation with sharp pain on the side of my ear and head. g. p seen the next day started me on bioxin and said my ear and throat were red. Severe pain, unbearable...started, even codeine wouldn't touch it. Cartilage on ear, side of face and scalp were very sensitive, blister, like hives appeared only on the ear cartilage.  ent finally said i had a shingled type virus that attacked the t. nerve and the nerves in my ear. Have had some hearing loss and now have an ear ache that comes and goes, but i feel very tired, like getting over the flu, no appetite. I am also on aclyovir, augmenting, I have had the steroid injection and the steroid med pack. neurologist says I will have to take the neurotin for 3 mos. Has anyone out there ever had shingles that were like this?

Name: Preggy
Email: lillygirl88@hotmail.com
City: Pollock pines
State: ca
Country: USA
Diagnosis: Occipital Neuralgia, possible hemifacial spasm
Treatments: none yet
Comments: I'm pregnant and scared!!!!!!!!!!!!!!!!!!!!!!!!!
Date: 11/01/00

My story begins in may of this year. i was then 3 mo. pregnant. Symptoms such as tingling of face, head, arms, and hands began. I went to the hospital to E.R. with drooping of my left eye. The doctor at the ER did a CT scan and couldn't find anything but sent me to a neurologist. From there a MRI was done and he diagnosed me with migraines. About 2 mo. later, I started to have severe pain in the back of my head. Almost a pinching sensation and also spasms in my eyes cheek, temple, and lip. My new doc. thinks it's possibly occipital neuralgia. Please, if anyone has any opinions about this, write me. I'm 23 yrs. old, having my first child, and I'm so very scared! Thank you all for listening! Shannon

Name: Manohar 
Email: ankit@HD1.VSNL.NET.IN
City:
State: 
Country: India
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, homeopathy
Comments: 
Date: 11/03/00

Hi Fellow pain sufferers, 
I am Manohar MLA for short, from India.  I have been a sufferer of TN facial Right side for almost 7 years now.  It all started with flashes of pain shooting up from the upper right side teeth. I went dentist and was fortunate he immediately diagnosed as FTN in early stage.  Then week later I had the first strong attack with continuous shooting  pain

The best description I have found is as if someone has put two wires one on the cheek and the other on the head and switched on the current. First spasm lasted a few seconds.  Then later in the evening, the spasms became longer and more intense and frequent. I called my dentist and he advised me to take a Tegretol and see the Neurophysician next day.  I took 100 mg of Tegretol and I was so pain free that I forgot about  this for a whole one year!!!!!!! 

Since I was so pain free I did not see any neurophysician.  But that was lull before the storm.  Quickly, the pain intensity and frequency kept increasing, as did the dose of Tegretol from 100 mg to 1200mg. Still no effect.  I tried all the neuro doctors in town, Hyderabad, and also called my schoolmate, Dr Raj Kumar Narayan. By now a famous Neuro Surgeon and Director of Neuro dept of Temple Univ. He also confirmed the treatment being given but also advised me to try alternate, even grandmothers remedies (we have plenty of those here in India) as this pain has Monkey-like characteristics. Needless to mention that all tests, MRI, CAT  etc all showed every thing was as good as can be.   

Well I added Homeopathy to my list and started Doing Yoga.   From being confined to home both due to pain and also due to drug  affects, I was soon able to move around. I was able to drive and attend office. Only it was very embarrassing as the pain would come  suddenly and freeze the entire right side of face. Particularly those days I was the president of the Local chamber of commerce and I used to have several important meetings with Govt and business delegations.  The pain would strike suddenly and in middle of your speech, in front of a big audience you were left speechless.   Much against his advise I persuaded my dentist to do root canalling on  two of the teeth which I felt were trigger points and that helped for  a month or so. The pain trigger shifted to the next tooth.   The pain was so bad I tried every thing. Acupuncture ( gives  short-term relief) Sujok ( Acupuncture on the palm ---Minor relief)  Flower therapy (No perceptible releif), Acupressure etc.   All this was in 1994-95.   Over the years I have found the following things that effect TN (Not necessary this is true for every body)  1. The pain increases when air is moist & cold. Avoid such atmosphere.  Luckily out here the weather is warm for most part of year and also dry  .  2. Hot water relieves pain. So I take long hot showers.  3. Any thing that acts on nerves like alcohol, sleep drugs triggers  strong pain. Two years ago I had a long pain free period of six months  and in a moment of weakness I took a drink and the pain was back with  full intensity, and it took more than two months for the nerves to calm  down.  4. I have been taking a combination of Tegretol( Dose depending of the  intensity of pain 0- 400 mg per day) with a consistent Homeopathic treatment, sorry I cannot tell what homeopathic drugs are given as these  guys don’t tell you. They just give sweet sugar globules.  5. I am balding. When the pain started I was just getting to be bald and the nerve just inside the hairline was the main pain channel. Now as the hairline has receded the nerve has also shifted. Looks like becoming bald is my salvation!!! I hope the monkey does not find some other nerve to irritate.  6. From Classical the pain has become ATN with phases of Classical TN. I had tried all pain ointments and had found that Lidocaine applied over the inflamed nerve gives some relief. I am pleased to see from the  web site I visited today that it is a prescribed treatment. I have also found that muscular sprays sprayed along the inflamed nerve and at the base of skull let you sleep well WO any medication for sleep.   Thankls for bearing with my very long narration.  I was motivated to look up the internet as a friend met with similar  blackouts as described by Preston. I was curious to find out Different  types of Neuralgic problems.
 MLA

Name: Shannon 
Email: lillygirl88@hotmail.com
City: pollock pines
State: ca
Country: USA
Diagnosis: Occipital Neuralgia, possible hemifacial spasm
Treatments: none yet
Comments: I'm pregnant and scared!!!!!!!!!!!!!!!!!!!!!!!!!
Date: 11/01/00

My story begins in may of this year. i was then 3 mo. pregnant. Symptoms such as tingling of face, head, arms, and hands began. I went to the hospital to E.R. with drooping of my left eye. The doctor at the ER did a CT scan and could'nt find anything but sent me to a neurologist. From there a MRI was done and he diagnosed me with migraines. About 2 mo. later, I started to have severe pain in the back of my head. Almost a pinching sesation and also spasms in my eyes cheek, temple, and lip. My new doc. thinks it's possibly occipital neuralgia. Please, if anyone has any opinions about this, write me. I'm 23 yrs. old, having my first child, and I'm so very scared!Thank you all for listening! Shannon

Name: BettyK
Email: Private
City:
State: Fl
Country: USA
Diagnosis: Always just called Neuralgia, do not know type
Treatments: Ibuprofen 200Mg (3 at a time) every 3 to4 hrs
Comments: It usually comes on when I have been in a draft.  The pain always comes on suddenly in my right cheek and radiates up the side of my face and exits at the top of my head.  It has lasted from 1 day to as long as a week.  Head gets so sore it is difficult to comb or brush your hair and you don't care if you do.  I have also found that if I put that side of my face on a warm heating pad this helps.  Any suggestions as how else to help will be appreciate.  I am just coming off a 3 day seizure.
Date: 10/31/00

Oops, just put all of this in the comment section. I have suffered off and on with this since 1968/69. Have broken some darn nice dishes when the pain hits. It only last for a second or two but d...... that smarts.

Name: scott 
Email: sbartleet@aol.com
City: aspen
State: co
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: acupuncture
Comments: seems to lessen the intensity
Date: 10/30/00

ok im a 32 year old male and have been suffering (in every sense of the word!) from this condition for 2 years the condition seems to come and go and im yet to determine what triggers the onset of the pain which lasts for a period of around 8 weeks i can detect faint aches when its starts and within a week it builds and is sustained over a period of around 7 weeks before receeding into a pain free state (for about 2 months) bit like a bell curve...of pain! at its most intense i get 'attacks' thoughout the day and night when talking/eating...it blasts into my jaw subsequently knotting up all jaw muscles(pain probably lasts 30secs- 1 minute) i find a can relieve the pain via external massage and sort of a swallowing action internally interestingly pain commences upon eating by receeds after several minutes of eating to nothing even though eating continues

doctors have prescribed drugs to treat the symptoms but after looking at the side effects i have never tried them

i have tried acupuncture (both laser and needle) went has lessened the intensity and pain 'periods' its more of a wholistic approach to treat those other effected areas thereby lessening the overall strain on those effected areas

it does not treat the problem which presumely is sourced at the point of pressure being applied to the trigeminal nerve

what interests me is the reason for the subsiding/reoccuring pain periods... presumely the weak point where the nerve is being interfered with has damaged lining...it would seem this must regenerates(the pain stops) and degenerate (the pain starts)... why??? maybe the body reacts to the weakspot by building up the lining which then recedes over time, pain starts, the body reacts, builds up resistance, recedes...etc

its certainly is very cyclic in my particular case im currently pain free now just getting over an 8 week stint...not pleasant and rather depressing and aggrevating at times

dont know where the solution lies...i suppose i hope it will magically disappear from whence it came!

i do have this theory that the condition might be due to a bad neck/vertabrae injury that i sustained whilst surfing several years ago (fractured two vertebrae) and that the calcificaton from the knitting back of bone fragments may be the cause of rubbing on the nerve??? i no doctor...just a simple architect i dont know if this story help anyone... but i can recommend acupuncture for temporary relief...i also saw a looked into spaoke to a dietrian/homiopath who recommended several natural remedies including fish oil, magnesium, and lympodram..hard to tell if they helped

good luck!

scott 

Name: Nadine 
Email: rrober19@bellsouth.net
City: Burlington
State: NC
Country: USA
Diagnosis: Chronic central trigeminal pathosis in the distribution of the left inferior alveolar nerve
Treatments: Two surgeries,numerous drug therapy, and other therapies
Comments: 10 years of chronic nerve pain in mouth is long enough.
Date: 10/26/00

My story is a very long one since it has been 10 years. I am one of those people who treatment, surgery, drugs, and anything else I tried didn't work. My doctor told me that there were lots of people with nerve damage, but not everyone has this terrible pain. He tried some of the same treatments and etc. on other nerve damage patients and they worked. I do not, in any way, want to discourage anyone from seeking help, due to my story. I had a wisdom tooth pulled, on the left lower side, that had 3 roots. The middle root did not show up on xray. The nerve was wrapped around the middle root and was pulled out. I had a nerve graft that gave me pain relief for 3 months. The pain came back, without warning, and came back with venegenance. It was worse than ever. In 1994, I had RF surgery by a doctor in NJ. He said it might not work but it would definitely not make it worse. Well, he was very wrong. It was worse after that. I haven't had any thing else done since then. I have taken Tegretol, Dilantin, Baclofen, Elavil, Klonopin, Ativan, Neurotin, Pamelor, and so many others . They didn't work. They put me to sleep and I couldn't function like that. At that time, I was very active. Some of these drugs I have tried more than once. This story could go on and on as you well know. The final results is, the pain is still with me 24 hours a day, 7 days a week, with no end. I never have any relief. I take a pain med. now, hydrocodone, and it does help me cope. I am putting my story on every website I can find to help others and to see if there is some doctor out there who monitors these sites. I am really praying for some help and mainly a cure before too much longer. I am really at the end of my rope. My doctor did tell me of a new drug that was not FDA approved yet. The name of it is, Morphidex (morphine and dextramethorphan), which seems to help neuropathic pain conditions. Has anyone heard of it? Good luck to everyone and may God Bless all You. NADINE

Name: DEBORAH 
Email: dkrogers60@yahoo.com
City: MARSHALL
State: IL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: TEGRETOL AND DILANTIN COMBINATION
Comments:
Date: 10/26/00

I WAS FIRST DIAGNOSED WITH TN APPROX 5 YEARS AGO. IT STARTED AS AN ACHE IN MY RIGHT UPPER JAW AND I THOUGHT I HAD A TOOTH INFECTION. MY DENTIST ASSURED ME THERE WAS NO PROBLEM WITH MY TEETH AND REFERRED ME TO MY FAMILY DOCTOR FOR THE POSSIBILTY OF TN. MY FAMILY DOCTOR AGREED WITH MY DENTIST AND REFERRED ME TO A NEUROLOGIST WHO CONFIRMED THAT IT WAS INDEED TN. I BEGAN TAKING TEGRETOL BUT THE PAIN BECAME HORRIBLY UNBEARABLE. THEN I WAS STARTED ON A TEGRETOL/DILANTIN COMBINATION, WHICH WAS EFFECTIVE. I CONTINUED TO HAVE VERY SLIGHT ACHE FROM TIME TO TIME, BUT IT WAS NOT A PROBLEM. THEN IN OCTOBER OF 1999 I WEANED MYSELF OFF THE MEDICATION AND REMAINED PAINFREE. I THOUGHT I WAS CURED! IN SEPTEMBER 2000 HOWEVER, THE FAMILIAR ACHE BEGAN RETURNING. AFTER A FEW DAYS, I BEGAN TAKING THE DILANTIN AGAIN, AND AFTER A WEEK OR SO, ADDED THE TEGRETOL. I AM STILL HAVING PAIN, AND IT IS BECOMING STRONGER EVERYDAY. I KEEP HOPING THE MEDICATION WILL "KICK IN" AND I WILL AGAIN BE PAIN FREE. THE PAIN HAS NOT YET BEEN AS BAD AS IT WAS 5 YEARS AGO, BUT IT SEEMS TO BE CONTINUALLY INCREASING. WHAT REALLY SURPRISES ME IS THAT MOST PEOPLE HAVE NEVER HEARD OF TN, EVEN MY CO-WORKERS (I AM A REGISTERED NURSE). I REMEMBER IN NURSING SCHOOL, THE TEACHER SKIPPED OVER THE SECTION ON TRIGEMINAL NEURALGIA SAYING, "YOU'LL NEVER SEE ANYONE WITH THAT". I DID INFORM HER AFTER CLASS THAT NOT ONLY HAVE I SEEN SOMEONE WITH TN, I LIVE IT! SHE JUST BLEW ME OFF. PEOPLE NEED TO BE EDUCATED!

Name: Gina W.
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Trileptal ~ The 5 Month MIRACLE!
Comments: Momma Is STILL Pain Free!
Date: 10/21/00

Good Morning Wonderful Brave Friends, It is now the 5 month update I am sharing. Momma is PAIN FREE! For 5 months now. Nothing, not even a flinch. Dr. Gopinathan from NYU Medical Center, Clinical Professor of Neurology gave my my mom this prescription and says the combination is what makes it work. Ready? Pen please! 2 150mg of Trileptal in the A.M. 1 10 mg of Prozac in A.M. 2 150mg of Trileptal in the P.M. 1 10 mg of Bacloflyn in P.M. Medication has NO SIDE EFFECTS! NO SIDE EFFECTS! No drowsiness, no blood work, no NOTHING! And......so far my mom is a walking miracle. She is doing EVERYTHING! Driving, eating, washing her face, chewing, sleeping, combing her hair, makeup on, EVERYTHING! Nothing from the past effects her anymore. The wind, touching her face, her mouth, the weather, NOTHING has gives her any pain anymore! PLease try this miracle medication. And God Bless everyone of you. Love, Gina

Name: "beans"
Email: none
Diagnosis: Glossopharyngeal Neuralgia
Treatments: amitriptyline and Klonopin
Comments: help!!!
Date: 10/18/00

about ten years ago I had a sinus infection which caused me severe throat and ear pain...however, once the infection went away the pain did not. i had severe ear, tongue and tonsil pain on the left side which put my neck into a spasm. after seeing 5 ear nose and throat specialists , a neurosurgeon and neurologist. (I even went to the Clevelend Clinic and Hershey Medical Center). after using sinequan, then tegretol... dilantin.... vistaril......ketamine......prednisone.....aspirin 4 times a day while wearing a sports mouth piece I truly felt disgusted and totally out of my mind. If it weren't for my gynecologist I probably would have had a nervous breakdown due to the depressive state I was in. Luckily, I ended up taking a combination of amitryptyline (prescribed by a TMJ specialist) and klonopin ( my previous doctor thought I had a sinus drip and that I needed psychiatric help to learn to deal with it). anyway, I've been taking 20 mg of Elavil at night as well as .5mg of Klonopin at night with sometime having to use the klonopin during the day for bad days. i find that the cold damp weather really sets the pain off. especially if i don't wear something to cover my ear. Just the cold air or even the air conditioning in my car hitting my ear will trigger the pain and it lasts and lasts (not just minutes! Hours!) at this point the dosage isn't working as well so I started (stupidly so) having some beers in the evening to deaden the pain) but the next day result is feeling like crap and having my mood even lower than before. I have an appointment to see a pain specialist but I have to be honest I'm not really looking forward to it! I have told this story so many times I feel like it's a continuous nightmare. At night i'm so tired from distracting myself from the pain it wipes me out and I'm losing the level of joy I used to get out of my life!! I use to feel in my twenties (I'm now in my forties).....lately I feel like I'm 90. My pain is also triggered by singing! this used to be my stress reliever and I've been robbed of it (although some days I don't care and sing anyway cause I know sooner or later another long bout of pain will be coming). my husband tries to understand but unless you experience this it's beyond words to describe. I hope my pain doctor is good. if he is i'll let you know. Beans

Name: DIANNA
Email: REDWIDOWSPIDER#@AOL.COM
City: BLUFFTON
State: SC
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: STEROIDS SHOT INTO FACE
Comments: NOT WORKING
Date: 10/18/00

HELLO, I AM 42 FEMALE, I WAS INVOLVED IN A CAR ACCIDENT A YEAR AND A HALF AGO AND DAMAGED MY FACE, NOTING THAT CAN BE SEEN, ONLY THE PAIN IT HAS LEFT ME IN TO THE POINT THAT I AM NOT ABLE TO WORK,,,,,LOOKING FOR OTHERS WHO SUFFER THE SAME AND WHAT TREATMENTS ARE AVAILABLE....PLEASE HELP...FEEL LIKE IM LOSING MY MIND FAMILY DOESN'T UNDERSTAND,,,,,,,

Name: Sherry
Email: seudy@carolina.rr.com
City: Kannapolis
State: NC
Country: USA
Diagnosis: Trigeminal Neuralgia,  facial lymphedema and RSD
Treatments: Pain Clinic - First Visit 10-17-00
Comments: Taking Neurontin and Klonopin along with antidepressant
Date: 10/18/00

Well, my story began when I was 13 years old and was in a sledding accident (hard blow to the jaw when I ran into the side of a house while on a sled). I'm 48 years old now, so that was 35 years ago. My parents didn't take me to the doctor (back then they probably wouldn't have done anything anyway). As I got older, my jaw grew crooked/tilted and none of my teeth touched. I also developed severe pain and popping noises in both of my TMJ's. By the age of 40, I couldn't get my mouth open wide enough to put one finger between my teeth. I was smashing my food down and/or breaking it off and putting it between my teeth to eat (and even then I couldn't chew because my teeth didn't touch). Anyway, I went to my dentist to get my teeth cleaned and my dentist couldn't get my mouth open wide enough to clean them, so he sent me to an oral and maxillofacial surgeon for evaluation of TMJ disorder. That was in 1991. That was when all the surgeries started on my face and TMJ's. In '91, I had my first TMJ surgery and then another one in '92. Then jaw surgery in '93 and another TMJ surgery in '94. In '95, I changed oral surgeons and ended up having total joint replacement (using a metal prosthesis) of my right TMJ because of all of the damage from the previous surgeries. I also had to have sinus surgery that year because of constant sinus infections from all of the screws and plates that were in my upper jaw (maxillary area). My ENT doctor removed a lot of the screws/plates but left one in there that he couldn't get to at the time. Well, the total joint replacement and sinus surgery lasted about 4 years before I started getting more pain and problems in my sinuses and right TMJ. On October 28, 1999, my ENT doctor did another sinus surgery (including a procedure called a Caldwell-Luc, where they cut inside your mouth and open up your maxillary sinuses from that direction). He removed that final screw that was in my right maxillary sinus area (in the bone), along with a lot of diseased sinuses. About a week after that sinus surgery, I started having pain in my right TMJ, where I had the metal prosthesis. That pain got worse over time and I ended up going back to my oral surgeon for several weeks before he finally decided it would be best to remove that implant and replace it with the new "all-metal" TMJ implant. NOTE: The implant that he removed had an acrylic condylar head on it and had worn down to the metal stem over a 4 year period of time. The new implant has a metal head (which should not wear down, like the acrylic did). Anyway, that surgery was done on March 24, 2000 (this year). Immediately following that surgery I had facial paralysis of the VII facial nerve. I could not close my right eyelid nor could I raise my right eyebrow. I was also very numb all along the right side of my face from the top of my forehead, down to my jaw/neck area. It took about 3 months for the movement to start coming back in my eyelid and eyebrow but they finally did and I can now close my eye and raise my eyebrow. I still have the total numbness though and in the past month I have developed a burning, stinging, shooting/sharp pain in the right side of my face and neck area. I went to a Pain Clinic yesterday (October 17, 2000) and the doctor there diagnosed me with trigeminal nerve damage. He examined me very thoroughly and told me that I definitely had nerve damage all around the trigeminal nerves in my entire face. He put me on a couple of medications to try to help with the pain (Neurontin and Klonopin) and he has also scheduled me to come in and get a ganglion nerve block. He is going to sedate me for the nerve block because he said that some patients have pain when they stick the needle in the throat/neck area, that sometimes radiates to the neck and shoulder, so I "agreed" to having the sedation. I have been sedated so many times over the past 9 years that I do very well with it, so I want to be sedated (I hate this pain). Currently, I am just waiting to get the nerve block and to see how the medications do. This is all NEW to me, so I guess I will learn as I go. I would appreciate any help or advise that anybody can give me (especially, if you have been through any of what I've been through above). One more thing, I also have (what the doctor called) LYMPHEDEMA in the right side of my face, which is swelling caused by the lymphatic system not draining properly. Mine is due to all of the scar tissue from the multiple sinus and TMJ surgeries that I've had over the past 9 years. The last surgery is what made everything worse (even though I know that it had to be done). I am scheduled to go to physical therapy at a Lymphedema Center this coming Thursday to try to get the manual lymphatic drainage massage done to my face. I sure do hope this works. Thanks again for letting me post my story. Sherry

Name: Kelley C.
Email: dacoulters3@cs.com
City: Morristown
State: in
Country: usa
Diagnosis: Trigeminal Neuralgia, stroke
Treatments:
Comments:
Date: 10/15/00

My daughter, Ashley is 22 years old and her problems started about a year ago. She was complaining of "flashes of light" that went from her temple down through her neck. I didn't think alot about it at the time, I thought she was just having some sort of weird spasm and they only happened occasionally. Three months ago she came home from work complaining she had a terrible headache. The next day the headache had worsened. She then had a seizure. We called 911 and she was taken to the hospital. The next day we were told she had a brain tumor. Surgery was scheduled. It turned out she did not have a brain tumor at all. She had had a stroke and that the flashes of light she had been experiencing were TIA's. The "flashes of light" were gone - until last week. Back to the hospital we went. Her neurologist said she was experiencing "incision pain". BULL!

Ashley had gone to the dentist 3 days before and had her wisdom teeth cut out thinking that was what was causing her pain. Her face and jaw are so painful she stays taking vicodin.

Name: Pauline
Email: paulinedin@lineone.net
City: Kenilworth
State:
Country: England
Diagnosis: Atypical Facial Pain
Treatments: daily dose of Amitriptyline
Comments:
Date: 10/14/00

I thought that my pain and discomfort were related to dental problems but after various x-rays and treatments, which did not help, I decided to approach my doctor. I have only started on my amitriptyline drug treatment and am hoping it will help as I have found that painkillers such as Ibuprofen have done little to ease the pain. I would be interested to hear of how any one else copes with the pain. I practice aromatherapy and am hoping to undertake an aromatherapy diploma so will investigate further with my tutor if there is anything in the field if aromatherapy which can help ease my attacks.

Story
I was setting at a meeting a work when I had the a pain shoot through my face so bad I had never had anything like it before. As soon as we had a break I went and called my Dentist as I was sure it was a tooth. He checked my teeth and told me there was nothing wrong with them. The pain didn't come that often at first just got more frequent as time went on. I went to every Doctor trying to find out what was wrong. My Dentist wanted me too have a root-canal, I told him if he wasn't sure that was going to take care of the problem then No I would not have one. I had gone to all these Doctors with no success so I had one more to go to that I hadn't tried a Chiropractor, I went in and told him how I felt and he said right off I had Trigeminal Neuralgia. He gave me all the information he had, which wasn't much and I took it back to my other Doctors and said Is THis What I Have. They said oh yes and started treating me for it. They gave me Tegretal and within 24 hrs I was broke out in hives, 2 weeks later I was sent to a Neuro Surgen. I went to Dallas Tx to have my surgery as our kids lived there. Dr. Samm Finn operated on me, I recommend him if anyone needs to have surgery. I was only in the Hospital from Thursday till Sat. NO MORE PAIN! However 2 months ago I started have some problems I am now going through the same thing once again. I will go back to Texas at the end of this month. Don't know what will happen yet. Eilene

Name: "bear"
Email:
City: Wolverhampton
State:
Country: United Kingdom
Diagnosis: Trigeminal Neuralgia
Treatments: various
Comments: all are useless
Date: 10/05/00

Story
Hi. I have serious pain as I write this. I have had TN for 5 weeks... 5 weeks 
of hell and pain I didn't think could be tolerated by anyone. I am a 45 yr old male in England and began this torture by visiting the dentist for what I thought was a bad toothache (sound familiar???). I ended up at my GP and was prescribed Carbamazapine (Tegretol)100mg daily. This was soon stepped up to 200mg...400mg...600mg (by now I was spaced out) until I reached 1600mg and still suffered badly from crippling pain that would buckle my kness and drop me to the floor. 1600mg of tegretol was supplemented by 600mg of DF118 (a codein medication)and within a week I collapsed whilst out shopping. I was totally out of it, freaked was the phrase I uttered before 20 minutes of painless unconsciousness took me to hospital. Since then I have taken amitriptiline, which gave me tremors so bad I couldn't walk, let alone attempt to drive...and now I am taking 600mg daily gabapentin. Guess what? You got it. That's why I'm writing. Where do I go now, save an early grave? I cannot take any more of this pain and I cannot take anymore of the pain it is causing my wife and our children. I have had enough, I have gone beyond the limits of my endurance and I GIVE UP!!! If you can help, don't just sit there. Do something. Write to me before it's too late and I beat you to it. Don't believe the song writers... you're NEVER too young to die.

Geoff (October 5th 2000)

Name: pamela 
Email: kc7ohy@earthlink.net
City: Sumner
State: wa
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: MicroVascular Decompression, Test Block for Glycerol Rys.
Comments:
Date: 10/05/00

Story
My newst Neurosurgeon recommended the route of Glycerol Rysotomy after a previously failed MVD in 1995. Before he would give me the Glycerol, he wanted to give me a test block, so that I would be able to have an idea how the numbness feeling "could" possibly feel.... I was given the test block on September 18, 1999 - It is now over 13 months and I have not received any zaps, zings, or anything since I had this test done. I'm not sure what he did, but it's been great!! My Kudo's to Dr. Schlitt of Valley Medical Center in Renton Washington for giving me my life back!!

Name: "Bubbman"
Email: Bubbman@aol.com
City: Tampa
State: FL
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Chiropractic and Neural Therapy
Comments:
Date: 10/02/00

Story
My name is Rohn Harmer, 57, and I am free of pain and do not take medication. After considerable research, I now believe that my condition is best described as "atypical trigeminal neuralgia" or "trigeminal dissethesia". Here are the milestones of my story.

October, 1999, my cheek began to ache at at spot near the left side of my nose. I saw seven doctors/dentists a total of nine visits before being diagnosed with trigeminal neuralgia. It was recommended that I take Neurontin or Tegretol, possibly for the rest of my life. During the first three months, the pain progressed to the point that I would have 10-20 attacks each day. I had problems talking, eating, shaving, brushing my teeth, etc. A dull pain progressively started in the lower jaw also. The sharp, stabbing pains were in the maxillary branch.

To shorten the story, I did not want to take medication, so I looked for acupuncture. What I found instead was a chiropractor who also administers acupuncture. This chiropractor asked about injury to my face and neck. This was the right question! I had been mugged five years earlier. Also, I had a whiplash accident on a boat about 18 months earlier. The chiropractor discovered that the atlas (e.g. number one cervical vertebrae) was severely misaligned. The chiropractic treatments helped to align the neck, but I still needed to deal with the former broken cheek bone due to the mugging. I discovered that neural therapy is very effective in treating neural problems due to injury. I located a doctor in Tampa, FL, who administered neural therapy. After six weeks of twelve chiropractic treatments and five neural therapy treatments, I experienced the first 24 hours of no pain in nearly three months.

Neural therapy is considered an "alternative medicine" because it is not widely practiced in the US. However, in Germany and South Africa, neural therapy is the MOST commonly used treatments for chronic pain. Today the "ground system theory", the foundation of neural therapy, is widely accepted in Europe. This theory state that it is actually the connective tissues between cells that control health, and that disease results from disturbances in this tissue. Neural therapy corrects the blockages of electrical energy in the body due to injury through the use of anesthetics injected into the nerve sites of the autonomic (independent) nervous system, acupuncture points, scars, glands, and other tissue. The most commonly used anesthetics are procaine and lidocaine, although I was treated with silocaine.

If you have had an injury or dental work prior to developing trigeminal neuralgia, even 10-20 years before, you should seek medical help to assure that you do not have problems with your neck/spine and that you do not have blockages of energy flow due to injury. Check out web sites for http://neuraltherapy.com

http://accuwavesources.com

These are good starting points. Good luck!

Name: Kathy
Email: Kathgall@aol.com
City:
State: FL
Country:
Diagnosis: Glossopharyngeal Neuralgia,  Atypical Facial Pain
Other: possible dystonia symptons
Treatments: trigem nerve block, sympathetic nerve block, tens unit, various relaxants and pain meds,antiseizures, lidcocaine
Comments:
Date: 09/29/00

Story
First, I want to say how sorry I am for all who have to suffer with ongoing chronic pain Only one who has worn the shoes can understand. My heart goes out to you.

I am five years into my facial pain. The majority of my pain, I feel stems from under my tongue. My tongue spasms a bit when relaxed. I also get pain in my lips and jaw. Talking results in horrific pain. Have had a swollen right lingual tonsil(on tongue)since the onset of this pain. To touch this tonsil is sore along with under my chin where the tongue base is. Have had many diagnosises and stumped many. Currently under a neurosurgeons care. Have tried relaxants, antiseizures, lidocaine, and nerve blocks to no avail. Any type of sinus action which I have often aggravates the problem. Thank you, Kathy Any thoughts or communication regarding this would greatly be appreciated.

Name: Robyn 
Email: rcyk@quixnet.net
City: Dallas
State: TX
Country: USA
Diagnosis: Glossopharyngeal Neuralgia
Treatments: Tegretol, Neurontin, Topamax, Triliptal, MVD
Comments: Trust and Search with God! Don't be afraid to ask questions or for help!
Date: 09/25/00

In 1992 while in Columbia, MO. I was diagnosed at the University of MO Medical Center. I had the typical symptoms of Classic Glossopharyngeal Neuralgia. Was first put on Tegretol. When I to the Dallas, TX area in 1998 I was switched to Neurontin. In June of this year I had such a hectic schedule that I had forgotten to take my evening dosage of medicine for several days. I was on 800MG 2x a day.

When the pain started increasing I discussed with my doctor about readjusting my medication as we had down in the past when ever I experienced additional pain. After a week the adjustment didn't take effect. The doctor then increased my medication to 1600mg 3x a day. Later on 100mg 2x a day of Topamax was added and even 300 mg 2x a day of Triliptal was added.

I still was experience pain. It was time to see the neurosurgeon. I had seen a neurosurgeon back in 1992 but we had decided that if medication could control it, surgery was not necessary and there were more risks back then.

My neurologist gave me 4 names she recommended and they were also on my medical plan. After studying the names and finding they were all at University of Texas, Southwest Medical Center, I just talked to God and asked for Divine intervention on who to pick. After having made my decision and informing my neurologist at one of my checkups, she was pleased and even gave Dr. Bruce Mickey another referral as he had been an instructor of hers, when she had gone to School at the UT, Southwest Medical school.

I had some very concerned co-workers who could see that the mixture of 3 meds was causing problems for me at the office. My neurologist did dome some more readjusting of the meds as it possible I went up to fast on the Triliptal.

I had the MVD surgery on Sept 11 and was home 3 days later. The doctor found both my 9th and 10th nerves were compressed by a blood vessel. He also clipped the 9th nerve. Its been 2 weeks since surgery. I've had my stitches out and I am back to driving and Pain free! I still have about 4 weeks before going back to work.

As with any surgery talk with all the doctors, research information on the Websites and any other place that you can and be prepared with questions. Also Pray alot and don't be afraid to ask others to pray with you and for you. If someone asks what they can do for you, don't be wishy washy just tell them straight out what you need! Before surgery the Doctor took me off the Topamax and Triliptal. My pain increased and I couldn't drive. My co-workers were super to come to my aid and drive me to my appointments until my family could come down and help out.

Name: Richard 
Email: Private
City: Winnipeg
State: MB
Country: CANADA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments:
Comments:
Date: 09/24/00

In 1996 i had my bottom molar removed.I was told my back molar was cracked.I had no previouspain before this check up.The dentist repaired the tooth and shortly after i started to experience some pain in that tooth.Went back to that dentist and he told me i need a root canal.I got a second opinion and i was told i had another crack in the opposite side of that molar.I couldn't afford a root canal and ask to have it pulled out.Once he started,it was two hours of pure hell trying to pull out my tooth.First he sherd my tooth off and started and started drilling the bone insude to get the rest of the tooth out.Finally he pulled one piece of the tooth out and gavep on the other and said it would work its way out.This dentist did alousy job on me,not sewing up my gum ,leaving a root tip behind ,which i had too get removed two months later .I kept getting pain in the area where he removed the one piece of tooth.Went back to this dentist acouple of times and said not to worry,it will heal in time.The pain is sometimes like a tooth ache.It starts off with a dull pain and gets worse.I would massage it,but doesn't help.This pain was only in one spot at the time.Right at the corner where the tooth use to be near my last molar.Two years later,i started getting pain on the side of my gum,on my last molar.The pain i had originally was gone,only if i poke it it would hurt.As soon as the the pain moveed over my problems got worse.I started getting jaw pains,my back of my head started to ache.My chin.It wouldn't hurt all at once.The main pain was the gumthat would start off and then radiate the other pains on one side.Sometimes both sides.This is so bad sometimes i don'y know what to do.I'm thinking if these medications don't work,i want tp pull this tooth out where the pain is.I've been to a oral surgeon,root canal speicalist,pathologist,pains clinic,neuraligist,and now a neurosurgeon.I been told from other dentists i have post extraction pain to fathom pain,dry socket,post-traumatic neuralgia.I've already tryed gabapentin,cyclobenaprine,doxepin,prednisone,amitriptyline,celecoxib,phenytion which didn't help me or made me ill.Carbamazepine,which help a little for acouple of days,but pain came back.It's strange though,most of the time when i sleep it settles down or when i workout.I've had a bone scan and found inflammation near the gum and jaw area.Dental x-rays showed nothing.Had a MRI done and found nothing.I don't have a stabbing pain or burning pains or numbness. Just aching pain off and on. Now my eyes are playing games with me .I get this wavingness when i look at certain objects. Eye speicalist says my eyes are fine. Could this be caused by long term neuralgia? It seems the longer i have  this condition,i get new pain somewhere else. This is making me go insane. Could someone please tell me what i should do,please.

Name: ed
Email: Private
City: coolum Beach
State: Qld
Country: Australia
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain, Anesthesia Dolorosa
Treatments: 2x MVD 3xCauterising
Comments: No more ops Currently Numb
Date: 09/23/00

N o more ops, alternatives Ltd, doing all I can to get fit to frustrate a return to T N including removing root therapy teeth, amalgam. QRS therapy massage, facial lymphatic drainage aquacise and gymnasiam.

Name: Lisa
Email: SthnBelle5@aol.com
City: Birmingham
State: AL
Country: US
Diagnosis: Atypical Facial Pain
Treatments: Neurotonin 900 mg/day, Zoloft, Mobic, acupuncture
Comments: Just diagnosed with atypical facial neuralgia after 4 1/2 months of constant severe, burning pain in between my eyes apparently caused by eye inflammation (dry eyes). No opthalmologist could understand my severe pain. I have finally found major relief 1st day after starting medication!!
Date: 09/17/00

Hello... I'm a 31-year-old female that has suffered from 4 1/2 months of chronic, severe burning pain across my forehead and in my eyes that started from an inflammation of my eyes. I just found out that I most likely have a very rare type of atypical facial neuralgia. I have just gotten relief the past few days after starting medication.

This all started with a bad eye inflammation after using a new make-up product. I already had mildly dry eyes, but an eye doctor put two tiny tear duct plugs in about 3 years ago and after that my eyes never bothered me..until I used a new eye make-up remover product, which apparently I was allergic to and it set off the inflammation.

My eyes became severely inflamed and the eye doctors I went to.. about 3 or 4 didn't treat it properly and said I had dry eyes and gave me some no-good eye drops to use that I could buy at the drug store. My regular eye doctor did try and help me (an optometrist) and gave me steroid drops, but they didn't work. He referred me to an opthalmologist. She gave me more steroid drops, but they didn't work and my eyes were burning all the time, but she said my eyes looked good and still did not understand the severe pain after using them. She then gave me some experimental Cyclosporine eye drops and after 3 weeks they finally worked.

My eyes burned so bad all the time, my vision was blurred, and my forehead right in between my eyes felt like someone lit a fire under it and was hitting me with a hammer. The pain was so bad I had to go to the ER twice. I thought I was going to die. My blood pressure went up to 180/90s and I have always had very low blood pressure. I kept thinking of ways to kill myself every day. I kept my job because I have my own office and don't really have to interact with the public or anyone much... it was a nightmare though. I cried every single day at work and home, and was under tremendous stress. My poor husband was suffering too and had to do everything.. shopping, take me to doctor's visits, etc. I became an invalid and all I did was try to sleep since that was the only relief I got was sleeping. I think that if I had not been young and healthy before this happened or had a weak heart or high blood pressure I probably would not be here right now.

Thank god my husband took me to the ER and they suggested I had some type of neuralgia, which the eye doctors never suggested. The last eye doctor did say I should get a CT of my head done. Before I went to the neurologist, I was put on all kinds of pain medications by the eye doctor and ER doctors and nothing worked! The pain meds slurred my speech and made my arms tingle. The ER doctor even suggested that I might have multiple sclerosis, but thank god I don't. The eye doctors never could figure anything out it took going to the ER. I have had a CT, MRI, EEG, and all kinds of blood work done and it was all normal.

I found a great neurlogist and have just started taking my medications the past 3 days and am feeling great relief.. still not 100% normal but about 85% to 90%. He gave me two shots of some kind of painkiller in the back of my neck and it is very sore. I do not feel the shots helped or the acupuncture I received while there, but I know the Neurotonin is what has helped me. I still feel a dull ache across my forehead. My eyes are almost completely better. I responded very well to all my medications.

If anyone else wants to write me..please feel free. I would really like to talk to someone who has experienced neuralgia. I am very worried about my future and I'm only 31 years old. I hope to have children and that this is not hereditary. My mom gets migraine headaches though and just found out she has some kind of blood vessel that is on her head growing and will have to have surgery for. Is it possible there is something hereditary with the blood vessels in the head?? I hope I don't have to take these medications forever and can go into remission.

Name: Lori Martin
Email: sweetlori_2002@yahoo.com
City: Blue Springs
State: Mo
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol 400mg a day
Comments:
Date: 09/17/00

I was in a bad car wreck about five years ago. The left side of my face flew forward and hit the air bag. Four months after that car wreck, I was experiencing facial pain on my left side. At that time I was living out of state. I went to a local clinic and the doctor stated that I had TMJ. The dentist said I did not. The pain occurred at that time, one day a week, very painful. Could not sleep or eat. The doctor gave me pain pills, did not help the pain, but did knock me out to sleep. I moved back home and went to see my family doctor who I had seen for years. He knew right off what I had, before that day, I went threw about three weeks of crucial pain. He told me I had TN, I was in so much pain, I did not care what it was, all I wanted was for the pain to go away. I have been on tegretol for four years. I have my life back. The tegretol has taken away the pain. The only time I get facial pain is when the weather turns cold and when my sinus drain. When that happens I usually take a motrin. The only bad thing is the doctor said I probably will have to take this medication for the rest of my life. Lori

Name: Lois
Email: 
City: 
State: 
Country: 
Diagnosis: Trigeminal Neuralgia
Treatments: Capsaicin, acupuncture, Gamma Knife
Comments: 
Date: 09/15/00

Capsaicin worked for me for a number of years, but it lost its effectiveness eventually. So did acupuncture. I also tried psychotherapy. Although each treatment initially seemed promising, eventually the pain would return worse than before. When my pain was at its worst, I discovered that playing heavy metal music as loudly as possible would help. I don't even like heavy metal (I prefer classical), but originally bought a Jimmy Page CD as a present for a friend. One day, I thought I'd play it so my husband wouldn't hear me scream. To my surprise, the pain attack stopped immediately. I spoke to my neurologist and a physician assistant, and they both knew of people with pain who were also helped by heavy metal. Strange...

I am very glad I had the gamma knife. I had it done at the Univ. of Pittsburgh-Presbyterian Hospital in December 1999. Dr. Lunsford did the procedure. I asked a neurosurgeon in my area to recommend the "best" operation and "best" neurosurgeon. I would have gone anywhere on earth to end my suffering. From what I understand, Dr. Lunsford is the surgeon who brought the GK to America (it was developed in Sweden) and he also trained many other American neurosurgeons in this procedure. I believe that he performs more GK's than anyone else in America. However, there is quite a "wait" to get him.

My local neurosurgeon recommended the GK because it is non-invasive (ie, no cutting) and has only a minimal amount of side effects (numbness sometimes, though in my case there is hardly any). In all of Dr. Lunsford's hundreds of follow-ups, there was _not _one case of anesthesia dolorosa. Dr. Lunsford said that I would have more than an 80% chance of improvement because I had had no other procedures, and probably the pain would go away completely. After a gradual lessening of pain, in about 6 months I was completely pain-free, and have recently stopped all medication. Before the surgery, I could not talk most of the time, or eat many foods, or leave the house due to the pain; I had a severe memory loss due to my medication, and spent a half year as a drugged-out recluse playing heavy metal at top volume and pacing back and forth in between hot showers. Now my life is "normal" and my prognosis is "excellent" (according to my neurologist).

As for the procedure: I was given a tranquilizer, and had metal rods placed on my skull so I would not be able to move. I was groggy throughout, and don't remember it very well. After the rods were removed and the tranquilizer wore off, my eyes were bloodshot and swollen (I was told they would be due to the pressure of the rods), but that cleared in a week or two. The procedure itself lasted 45 minutes.

The day I was discharged from the hospital, I had an major flare-up, and had to go to the ER for a painkiller. I was never told that this could happen. My neurologist said it was due to an inflammatory reaction to the radiation, and increased my dosage of Tegretol. The pain went away in a few hours, but it was excruciating while it lasted. (I believe that patients should be aware that this can happen after the procedure, though it's rare.)

I would not hesitate to recommend the GK to anyone who is a candidate for this type of surgery. I feel like "myself" again.

Name: Nancy
Email: nparry@nac.net
City: sussex
State: nj
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol and neuroptin
Comments: no better
Date: 09/15/00

Hi, I have just been diagnosed with trigeminal neuralgia but I also at times have atypical TN. I have gone to the dentists and they have done extensive dental work and then was sent to a periodontist who did root scaling on my gums. Next was an oral surgeon who pulled some teeth and checked for TMJ. I was put on vioxx for muscles in my jaw and valium to relax the muscles. Next was the ear nose and throat doctor who did all sorts of tests for my ears nose and throat and finally he recommended a neurologist. This doctor diagnosed me with TN gave me tegretol and said go get tested in three weeks for your liver. At three weeks I got tested and the level was slightly high. My ENT doctor asked me why wasn't I tested before I went on the drug and I said I didn't know. The ENT doctor said go again this week and retest. I did and the level was extremely high. So off the tegretal I came. I have to say that while I was on that medicine it did help but I had the worst side effects. Next I was put on Neuroptin. I have been on that for about one month. It helps somewhat but I still get bouts of incredible pain. I don't understand why the doctors I see are so unsympathetic to what this pain entails. I can't seem to find anywhere to turn to and thought maybe if I shared my story someone would write to me about what was helping them. I am so discourage at this point I don't know where to turn. The doctors tell you to take aspirin but no matter how many aspirin I take it does not help the pain. Thanks you for letting me share and please E-mail me,.

Name: "Jackie" 
Email: Private
City: 
State: VA
Country: USA
Diagnosis:
Treatments: Acupuncture, Healing Touch
Comments: Both treatments were successful in eliminating pain
Date: 09/03/00

I am not the victim, I am a Healing Touch practitioner. Trigeminal neuralgia is such a devastating disease that I feel compelled to recount the experience of one of my clients. She received complete relief from excruciating pain with acupuncture treatments twice a week over a period of three months. She was unable to continue a maintenance regime with her acupuncturist because of the travel distance involved. After about a year, she was back to agonizing pain. At this time she decided to try Healing Touch because coming to me involved a twenty minute round trip instead of one of four hours. After 24 Healing Touch treatments over a period of about five months, this client was not taking any medication and was pain free. She continues on a maintenance regime of one or two treatments a month and has remained drug and pain free for a year and a half. I wish to remain anonymous because I have no interest in promoting my own practice, but I do strongly urge anyone who might be interested in this therapy to locate a Healing Touch Practitioner by accesssing: www.healingtouch international.com

Name: reva 
Email: 
City: wausau
State: wi
Country: usa
Diagnosis: Trigeminal Neuralgia,  Atypical Facial Pain
Treatments: medication/gamma knife surgery
Comments:
Date: 08/31/00

Hi there, My name is Reva and I am 46 years old. I am a mother of 3 grown children and grandmother of 4. I have had tn and atypical pain for 16 years. I have taken tegretol, dilantin, amitriptyline, dolobid, neurontin etc... for my pain to no avail. I had gamma knife surgery in Jan. of 2000 and it has taken my spells of pain from 1hour down to 10 minute spells however I can have up to 50 spells a day. The hour long spells literally made me scream, I wanted to die rather than go on. My experiences with the medical profession were not good in that they had little interest it seems and didn't even want to discuss the situation, I had all but given up until my niece discovered the tn association on the internet. That led me to Dr. Ron Young at Good Samaritan Hospital in Los Angeles. Although I am not cured the surgery was helpful and I must note that I have two conditions and have had them for a very long time. It has been an extremely difficult period in my life, an understatement really, but I have to always have hope, there is nothing else if you don't have that. I have contemplated suicide on many occasions but I have not given in to it because of my family. I just couldn't do that to them, but the need for relief and an end to the pain gets so powerful that I don't think one would be normal if that thought didn't enter your mind at some point. I always try to visualize someone else who is in a worse situation and that helps as difficult as that can be when you're screaming in pain. When I read about people who have spurts of pain I am envious, not to belittle anyone else's pain but I would be happy to have spurts. The gamma knife surgery does take time to work, unfortunately for me my tn became active after the surgery, I had only four weeks of reprieve in 6 months. My pain put me down on my back for 8 days in which I couldn't move other than to go to the bathroom. I took only sips of water from a plastic cup, I didn't eat anything. I lost 11 lbs in 8 days. I am used to starvation but the inability to do anything is so difficult for me because I have many interests and I love to be busy.I am now on trileptal which is working, the first medication that has ever worked, thanks to Dr. Young who called my physician and recommended it. Dr. Young and his staff are a terrific team, I felt that they really cared and understood what I have been going through. That support is so essential, I just haven't ever found it in my area. I didn't know a soul who had the same condition, I had no support which makes the whole ordeal even more difficult. So many times I just wanted to hear,"yes, I understand what tn is like". I am so thankful that the tn association has been formed and that research will be done in the future, I am concered about my children and grandchildren coming down with this dreaded condition. If I can be some sort of support person for someone else I certainly would try to be so because I've been in a position where I felt so alone, for 15 years to be exact, we all need to help each other.

Name: Reva 
Email: r.furhman@gte.net
City: wausau
State: wi
Country: usa
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: medication,gamma knife surgery jan.2000
Comments:
Date: 08/31/00

My name is Reva , I am 46 years old, mother of 3 grown children and 4 grandchildren.I have had trigeminal neuralgia and a typical facial pain for 16 years. I have been on almost every medication available and I have been hospitalized on several ocassions. I had gamma knife surgery in Janruary of 2000 by Dr.Ron Young in Los Angeles. The surgery was partially successful for me. Before the surgery my pain would be so severe that I literally would scream for up to an hour, the spells were rarely less than an hour long and I had up to 10 spells a day. The surgery has bought them down to 10 minutes or so but they are still as painful. I would definitetly recommend gamma knife to anyone however. I have a typical pain as well. My pain generates from the jaw down to my lip area as well as in the side of my tounge. The nerves in all the teeth are affected as well. Just recently I was incapacitated for 8 days, I had to lay perfectly still and I forced myself to take sips of water which was extremely painful.My doctor was at a loss as to what to do next so I contacted Dr. Young and he suggested Trileptal. I took 600 milligrams a day 300 in the morning and 300 at night. After 2 weeks it started working and I now have split my dosage up to 150 milligrams every 4 hours. Sometimes I have to take it every 3hours. I have resumed a part time job and I can eat again but it is still very painful to brush my teeth. My condition has ruled my life for many years, I can't plan on anything, but when I am in remission I do everything I want to do and I eat whatever I want ,when I want, and I laugh as much as I can and I spend time with my grandchildren.What a normal person takes for granted, I cherish.There have been many times that I considered suicide, many times, but I just couldn't leave my family in that way. I believe there must be a reason that I have this condition butI have yet to discover what it is. I can tell you one thing,I know that whatever else may come my way during the course of my life I will be able to handle it because I have become stonger for my struggle. One of the most diffult parts of this condition has been that my extended never really understood the conditon so I had very little support and I think that support would have helped me so much, I didn't have anyone to talk to at all and you feel so very isolated from the world, I felt like a freak of some kind. I am the kind of person who loves to be active, I love to dance, play volleyball,sing,refinish antique furniture, take pictures, sew,etc....etc... so when I go into remission I do everything I can physically do because I never know when I will be cut off at the knees again. I should mention that the medications before surgery never worked. I have taken 1,000milligrams of tegretol along with 1000 of dilantin and they did nothing. I have taken 800 mill. of neurontin along with amitriptyline and that did nothing, just created alot of terrible side affects. I took dolobid, halcion and tegretol, which did nothing. So I have to say that gamma knife surgery did help me in spite of the severe case I have because no other medication helped me before. I would like to add that Dr. Young is a very caring Dr. and his staff at Good Samaritan are wonderful if anyone out there is considering gamma knife. I would love to hear from other TN patients out there, to anyone who reads this, HANG IN THERE!!

Name: mark 
Email: steiny9584@AOL.COM
City: COOPER CITY
State: FL
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: ONLY PAIN MEDS PERCOCET AND VICODIN ES
Comments: I'm very angry with the medical community
Date: 08/30/00

it started 2 years ago. i'VE HAD TWO SINUS SURGERIES. THE SECOND ONE BEING A CALDWELL-LUC. MY PROBLEM TO DATE IS I'M SUFFERING EXTREME HEADACHES ON THE LEFT SIDE THE TWO SURGERIES WERE ON THE LEFT SIDE. THREW THE YEARS I HAD SINUS COLDS. ON AUGUST 29,2000 I WENT TO THE CLEVELAND CLINIC. THE DOC SAID MY NERVE IS BASICALLY DESTROYED. HE WANTED TO PUT ME ON TEGRETOL I SAID NO. PLEASE HELP!

Name: Tim 
Email: FreightHauler40@aol.com
City: Muncie
State: IN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Radiofrequency Lesion/Microvascular Decompression
Comments: I wanted to update everyone since my post here about 4 years ago.
Date: 08/30/00

I posted here about 4 years ago during my second battle with Trigeminal Neuralgia. At the time I was 22 and the pain had recently returned after about 4 pain free years. I had undergone radiofrequency lesion, seemingly successful, in 1992.

It was actually easier the second time around because I at least knew what I had and knew where I could get help. Unfortunately for me the medication did not help very much for me the second time as the pain was much more severe. Within a couple of months my doctor had me taking 1600 mg a day of tegretol, and soon added baclofen to the mix. I apologize, but I don't remember the dosage for the baclofen.

The pain had returned March 96, I underwent Microvascular Decompression that August. It is now been 4 years and I am still pain free, knock on wood.

Keep in mind that this is no simple operation. I spent 1 day in Neurosurgical ICU and 4 days in the hospital altogether. I had a headache that lasted about 10 days but returned to work after 2 weeks. I had worked right up to the day before the surgery but I was not worth much because of the medication I was on.

I didn't have medical insurance at the time. My medical bills related to this treatment totalled over $28,000. Being pain free is well worth it but I thought I would let all who are curious know what Microvascular Decompression entails.

If anyone has any specific questions they want to ask me, you can e-mail me. FreightHauler40@aol.com

Name: Lupita
Email: briankb@primenet.com
City: Phoenix
State: AZ
Country: U.S.A.
Diagnosis: Trigeminal Neuralgia, Atypical TN, Atypical Facial Pain, Anesthesia Dolorosa
Treatments: Tegretol, NSAID, Neurontin, 2 surgeries to correct nerve damage, currently awaiting decision for possible Neurotomy procedure
Comments: Please help!
Date: 08/30/00

THIS IS KIND-OF-LONG, BUT PLEASE READ, I NEED YOUR HELP!

I am a TN sufferer for the past three years. I have all the conditions/symptoms of the classic TN; however I also have excruciating painful numbness on the bottom right side of my face. I had a dental procedure done 3 years ago(bottom right wisdom tooth removed) and ended up with severe damage of the trigeminal nerve.

I have had 2 surgeries since then, the first one my neurologist repaired the nerve by cutting the "shreded" part of the nerve caused by the wisdom tooth extraction; however, the procedure was unsuccessful. After a year-and-a-half of waiting for a miracle that the nerve will repair by itself, I underwent surgery for the second time. The Dr. found a blood clog in the nerve area, which he believes was causing most of the pain. This time the procedure consisted of extracting a piece of nerve located in the back of the right ear (we have some extra nerve there) and then replace the part of the nerve that was damaged with the new piece of nerve. The idea for this is to have some kind of implant of good nerve in that section and if everything went as planned the cells would connect becoming a one piece of nerve and the pain should subside; however, one again the procedure was unsuccessful. Although I should mention that the pain was gone during the first month after the second surgery, my mouth was completely numb (the feeling I had was like when a dentist gives a Novocain injection on the mouth when performing regular dental work) it was a strange feeling having no pain (after two years of constant excruciating pain, but my mouth was numb. I constantly bite my bottom right side of my lip and the inside of my mouth (right side). Despite all this I was in heaven! Unfortunately, like a clock after a month of pain-free-numbed mouth the pain came back WORST THAN EVER! I just wanted to die, you all know what it feels like, no sleep, constant pain, and I mean constant pain, not even for one fraction of a second the pain would stop, anyway all the conditions that are out there, I had and still have them.

I cannot remember the medical terms for the two procedures I had done, but the surgeries were done from the outside of the mouth, I have the scars on my neck (right side), to access the nerve, the doctor had to cut the jaw bone since the nerve runs through the jaw bone, then using a microscope he performed the procedures on the nerve. Both surgeries were done the same way. I have a couple of screws holding the piece of jaw bone that was cut in a square shape piece to access the nerve.

At the beginning of the treatment (before the first surgery took place) I was put on Tegretol and other medications that I cannot even remember, NOTHING WORKED! the pain was still there and the secondary effects from those outweighed the benefits (which in my case there were none, so I stopped taking them (after checking with my doctor).I have been in pain for three years now and unable to take medications for periods longer than a couple of weeks or so.

Up until six months ago my Dr. put me on Neurontin 200mg and it almost killed me, it made me so sick that he had to reduced the dosage to 100mg a day (at night), it is not a pain killer so the pain is there, but when the pressure on my mouth is too much it seems to relieve the pressure and I get some kind of comfort at least for a couple of hours.

My dilemma now is to decide whether I want to live with this disease or to undergo another procedure called "Neurotomy" which is the complete extraction of the nerve. I am very scared about this procedure. I have found not very pleasant information regarding this procedure, and it really makes me think about it twice. Is there anyone out there that has gone through this procedure, or that knows someone. I have my next doctor's appointment on Sept 11, 2000, during this appt. I will be telling my doctor of my decision. PLEASE HELP!

Although I know that the comments and stories shared here are from patients or family of, any information that you can give me will be greatly appreciated. I am only 32 years old and I still have a lot of things to do, I would like to be pain free again.

Despite all this pain and no medication to go with it, I still have a pretty good sense of humor and a lot of energy, but when the pain strikes....

Thank you and God bless you all sufferers and family of sufferers of this horrible disease.

Name: Michelle
Email: mikkisloved@aol.com
City: Williamsport
State: pa
Country: usa
Diagnosis: : Trigeminal Neuralgia, Occipital Neuralgia, NICO
Treatments: Tegretol, Gabitril, Neurontin etc... Cavitational Surgery
Comments: Knowledge is power.
Date: 08/29/00

Hello, It is incredible reading all of these stories. It is also very painful. I do, however, have a story that is positive, in the since that I am not suffering anymore and I am not dead. There was a time when I thought that my only relief would come when I died.

I was 24yrs. old and I had what I thought was chronic sinusitis. My eyes and face hurt all the time. I then started experiencing a sharp pain that ran up my face and behind my eye. This pain was so great that I would fall to my knees. I was always holding my face in my hands, putting pressure on my eye, hoping that the pain would just go away. I was very fortunate because my father is a research scientist and works in the field toxicology. I went to a dentist that removed a root canaled tooth. It was the most amazing experience. I felt relief even after having it drilled to take out any infected bone. The area tested positive for toxicity. Unfortunately, this is not the end of my story. Two years went by and I had no symptoms. Then I began to have migraine headaches, seizures, and facial pain. It got to the point that I was no longer able to work. I had lost all hope. I was sure that I was going to die. Again, my parents asked me to have the area that the root canalled had been examined. I was not aware at the time that a cavitation can develop after the removal of a tooth. At this time I was on Tegretol, Gabitril and Neurontin. I had cavitational surgery done the bone was examined. The results of the toxicity level came back as severe. I was able to stop taking all my med. except Tegretol. Later in the year I went back to have my impacted wisdom teeth taken out. I was getting ringing in my ears, pain running down my neck etc... I requested to have the teeth tested for toxins. To my surprise these teeth had developed the same bacterial infection and the toxicity was at the extreme level. I did not expect those results and I did not expect my neurological symptoms to go away. Today I am happy to report that I am not suffering from any neurological pain. I do not shake or tremor. I do not have any disabling pain. I do not have any seizures. AND I do not have to take any drugs.

I don't believe that dental problems are the only cause for facial pain. I do know my experience and I do see continual evidence in the scientific research.

I thank God, my family, and the courageous dentists that helped me. I can now be a mother to my children (two girls 6 and 8), a wife to my husband, and I hope to be of some help to someone on this web site.

Please feel free to e-mail me.

Good luck to all.

Michelle

Name: "K. John" 
Email: private
City: East Greenbush
State: NY
Country: USA
Diagnosis: Glossopharyngeal Neuralgia
Treatments: 1000mg Tegretol
Comments:
Date: 08/28/00

Diagnosed initially in 1996, 200mg/day alleviated all pain. Recurrence in 1998 boosted medication to 400mg/day. Most recent recurrence (now) has boosted medication to 1000mg/day and am still experiencing breakthrough pain; I am considering boosting to 1200mg/day.

There is a clear trend here. What next?

Name: Debra 
Email: DebraMcLaren@gatewaynet.bigpond.com
City: PORT MACQUARIE
State: NSW
Country: Australia
Diagnosis: Glossopharyngeal Neuralgia
Treatments:
Comments:
Date: 08/27/00

Story
On Friday, for the first time in my life (I'm 28) I experienced what I believe is glossopharyngeal neuralgia. During the morning I found that swallowing was painful and this progressed during the day so that by lunchtime if I swallowed a pain would appear near my ear on the left side of my face. No amount of prodding or poking could provoke a similar response and the pain only occurs when I swallow or move my muscles in a similar way. Wonderfully, playing clarinet does not cause the pain. I also suffer from mild sinus arrhythmia which I believe is significant. So far the pain is manageable and over the last few days has become less severe. I'm off to the doctor's now and don't know what to expect. I already take AD in the form of Paxil/ Aropax to treat panic disorder. Wish me luck!!

Name: "Marty"
Email: private
City: Bradley
State: Il.
Country: U.S.A
Diagnosis:  Trigeminal Neuralgia
Treatments: dilantin(didn't work) tegretol(didn't work) surgery
Comments: the surgery worked for a while.
Date: 08/25/00

Story
I worked in a mental hospital as a security officer. back in 1983 and was trying to restrain a disturbed patient, when he head-butted me in the chin causing my head to go backwards and the force caused me to chip several teeth. about a month later i though i had a severe toothache so i went to the dentist who could find nothing wrong he in turn refer me to a oral surgeon who also could find nothing wrong, he refer me to a neurologist, who then informed me that he believed that i had trigeminal neuralgia and he gave me a prescription of Dilantin, but it had no affect but after a couple of weeks it went away. I would get my "attacks" maybe once a year for a couple of weeks either spring or the fall) sometime i skipped a year. then in fall of 1995 it wouldn't go away and by this time the doctor i was seeing had given me tegretol and that didn't help all it did was give me a urinary tract infection. the doctor had me take two MRI's and a angiogram and seeing the results they tried to get me to surgery as quick as possible. when i enter the hospital they tested my blood my sodium level was dangerously low (because the triple my tegretol intake)it took three days to raise my sodium level (with a indwelling catheter with a sodium drip and a triple salt diet-yuch!!) after the surgery the pain went away until friday(08-24-00) i'm hoping it will soon go away.

Name: Gina 
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Trileptal
Comments: STILL WORKING!
Date: 08/23/00

Story
Good Morning Brave and Heroic Angels: This is my second posting on the new drug Trileptal, by Novartis Pharmaceuticals. I am bowled over by the amount of mail I have received questioning this new miracle drug. I am honored to help all of you. My mother is 84 and a sufferer. She has suffered for years. Tegretol lost its power after a certain amount of time. Her attacks became more severe. And I got myself into therapy, before my depression over watching this "thing" called TN destroy our family. Our past neurologist was absolutely no help. All he ever wanted to do was surgery. After praying for a miracle, I was given one. "Trileptal". We sought measures and took my mom to the Clinical Professor of Neurology in Manhattan at NYU Medical Center.) If anyone would like this miracle workers name, please e mail me.) The first week of starting the Trileptal, my mother's system was trying to adapt. It was not a pretty sight for the first week. But...after a week she started to change, and the drug started to work. It is NOW 4 months and she is pain free. Ever once in a blue moon she will get a mild "jab" as she calls them, that lasts about 2 seconds. But they are not painful, just annoying, as she describes. Absolutely NOTHING like the severe pain she was experiencing the past year. I am happy to tell you that she is a different person. Her life is back and so is MINE! I beg you all to ask about Trileptal. Speak to your doctor and call or e mail the TN Association. And if anyone needs more information about my mothers progress or questions about Trileptal, please do not hesitate to call on me. God Bless all of you. Love, Gina

Name: pamela 
Email: family lopez wade@aol.com
City: lahaina
State: hi
Country: usa
Diagnosis:  Atypical TN
NI:
ATFP:
VN:
AD:
ON:
NICO:
Other:
Treatments: acupuncture relief
Comments: relief lasts only a few hours so far
Date: 08/21/00

Story
THIS PAIN STARTED 2 MONTHS AGO AFTER EXTENSIVE DENTAL WORK. I'VE HAD A MRI AND FACIAL XRAYS THEY SHOW NOTHING. I TRIED NEUONTIN BUT THE SIDE EFFECTS WERE TOO GREAT. I'LL TRY TEGRETOL NOW AND HOPE FOR BETTER RESULTS. IN THE MEAN TIME I TAKE SLEEPING PILLS AND PAIN KILLERS. ELECTRICAL ACUPUNCTURE RELIVES PAIN FOR A FEW HOURS. POSITION AND HIGH PRESSURE SEEM TO TRIGGER THE PAIN. IS MY STORY COMMON? IS THERE RELIEF IN SITE?

Name: Leslee 
Email: LesMillion@aol.com
City: Woodville
State: TX
Country: USA
Diagnosis:  Atypical TN
Treatments: Splint, Shots, Nerve Blocks, Microvascular Decompression, Drug Therapy, Therapy, Biofeedback, etc.
Comments: Please write me.
Date: 08/21/00

Story
My living hell started on July 69, 1989. For eleven years now, after losing my business, a husband, my figure!, and my dreams of what I thought my life would be, I sit here at my computer determined to make my life count! I'm tired of living a life of laying around hurting--not being able to watch tv, read, work, or do most of anything due to the pain. My pain is atypical because it lasts throughout the day. I have attacks that occur randomly with or without triggers. The pain is right-sided, but it can be referenced on the left side, down my throat, and on my right shoulder and even down my arm.

The reason I am writing is I want you to write me. Why?

I am tired of doctors. I want some help, and I want it now. I admire the doctors who say the words, "I cannot help you." because they have the gusts to admit it. What I want to do is start a database of patients like ourselves, from a patients perspective to keep information about this disease.

I use to be a computer consultant, and I want you to write me and let me know about your case. I'll tell you more when you write me.

Let me hear from you. We can help each other more as a group than as individuals.

Name: pam 
Email: family lopez wade @aol.com
City: lahaina
State: hi
Country
Diagnosis: : Atypical TN
Treatments: acupuncture
Comments: had only one treatment pain free for 6 hours
Date: 08/21/00

Story
THIS PAIN THAT KEEPS ME UP NIGHTS NOW STARTED AFTER I HAD MY TEETH CLEANED JUNE 12TH. LAST NOVEMBER I'D HAD TWO ROOT CANALS IN THIS SAME AREA. 10 YEARS AGO WHILE HAVING MY EAR CURRETTE FOR WAX THE DR. HIT A NERVE IT WAS AGGRAVATED FOR A FEW MONTHS ONLY BUT WAS VERY SENSITIVE TO WIND AND COLD TEMPERATURES. THE MAJORITY OF PAIN IS IN MY LEFT EAR AND AT TIMES UPPER JAW NOW. WHAT SETS OFF THE PAIN IS POSITION AND HUMIDITY. I CAN'T LIE ON EITHER SIDE OR FLAT. AS THE HIGH PRESSURE INCREASES WHERE I LIVE SO DOES THE PAIN.(SEA LEVEL WESTSIDE MAUI) DRAFTS AGGRAVATE THE CONDITION ALSO. IS THIS COMMEN ? I'VE TRIED NERONTIN BUT THE SIDE EFFECTS WERE GREAT NOR DID IT HAVE AND EFFECT. I'VE BEEN ON 30MG OF TEMAZEPAM FOR THREE WEEKS NOW BUT I'M AWAKE TODAY AFTER ONLY 5 HOURS OF SLEEP. THAT AGGRAVATES THE CONDITION TOO IF I DON'T GET PROPER REST.FOR PAIN I'M TAKING VICODIN ES EVERY 4 TO 6 HOURS ONE TAB OR TWO DEPENDING HOW I FEEL. I'VE TRIED ACUPUNTURE WITH ELECTRICAL STIMULATION ONE TIME SO FAR AND IT SEEMED TO ELEVEATE THE PAIN FOR 6 HOURS OR SO . I GO BACK TO THE DR. AND ORIENTAL MD TODAY AUG.21 2000 5;20 AM. IS THIS A TYPICAL STORY ABOUT THIS CONDITION?

Name: pam 
Email: family lopez wade
City: lahainahi
State: hi
Country: usa
Diagnosis: : Trigeminal Neuralgia
Treatments: acupuncture
Comments: does it get better?
Date: 08/20/00

Story
THE PAIN STARTED THE DAY AFTER I HAD MY TEETH CLEANED TWO MONTHS AGO. LAST NOV. I HAD TWO ROOT CANALS ON MOLARS 14 AND 15 UPPER LEFT QUADRANT.10 YEARS AGO WHEN HAVING MY LEFT EAR CURRETTED FOR WAX THE DR. HIT A NERVE THE PAIN LASTED FOR ONLY A FEW MONTHS. MY PAIN IS FAIRLY CONSTANT BUT I'VE HAD A FEW GOOD DAYS. IT'S MOSTLY IN MY EAR AND UPPER JAW. IT FLAIRS UP WHEN THE HEAT AND HUMIDITY RISE OR WHEN SITTING NEAR ADRAFT SUCH AS A FAN. I'VE HAD FACIAL XRAYS TAKEN AND A MRI THEY SHOW ONLY A SLIGHT FRONTAL NASAL SHADOW YET I SUFFER FROM NO NASAL OR SINUS INFECTIONS. I'VE TRIED ANTIBOCTICS AND CLARATIN D TO NO AVAIL. NEURONTIN WAS TAKEN FOR ONE WEEK BUT THE SIDE EFFECTS WERE TO EXTREME EVEN AT A LOW DOSE 300 MG A DAY. I TRIRD ACUPUNCTURE WITH ELECTRICAL STIMULATION THAT SEEMED TO RELIEVE THE PAIN FOR ABOUT 6 HOURS. I QUESS THE ENDORPHINS WERE FLOWING.AT ANY RATE I'M TAKING VICODIN ES ABOUT EVER FOUR HOURS WHICH TAKES OFF THE EDGE BUT I'D LIKE TO GET ON WITH A NORMAL LIFE WITHOUT PAIN. I THINK I'LL ASK MY DR. FOR ZOSTRIX CREAM BUT I'M NOT SURE WHERE TO APPLY IT. ANY SUGGESTION? i'M ALSO TAKING A CHINESE HERB CALLED SNAKES AND DRAGONS TO TAKE THE MOISTURE OUT OF MY SYSTEM QUESS ITS A DIRECTIC. WISH I COULD TAKE THE MOISTURE OUT OF THE AIR.

Name: Julio 
Email: julio.boticelli@sernaval.com.br
City: Itajai
State: SC
Country: Brasil
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol 400 cr
Comments:                                    
Date: 08/16/00

Story
I started to feel this strong pain about 5 months ago. It appeared in the left side of my face, in principle, I thought it should be concerned to my teeth, I went to my dentist and almost drove her crazy because I could not accept that my teeth were in good order, then a neurologist has been indicated to myself and I went there, he explained that this illness is still incurable, he also emphasized that in case of a real and unbearable pain, surgery can be addresses, but there is no guarantee that pain will never come up. I am really afraid because I am taking this Tegretol and due to its effect I can do nothing during my work time. During night time, I can sleep just a few hours up to this pain comes up again. I have read yr msgs, and first of all would like to share all this hard time you are all facing. On next friday, I will see another Doc, but frankly speaking I am not expecting news or any solution for my case. If somebody is aware about any clinic specialized in this kind of illness here in Brasil, kindly let me know. Just would like to ask you to keep God in our hearts because someday we will be free.

Name: Mary 
Email: ashweetie@aol.com
City: Greensburg
State: pa
Country: usa
Diagnosis:  Trigeminal Neuralgia
Treatments: microvascular decompression
Comments: Make sure this is the only solution
Date: 08/15/00

Story
We were a family of eleven. Now we are ten. Our sister Christine loved children and babies. She could never have children because she was born with Turners syndrome, so she became a pediatric nurse and cared for all the babies. She had other health problems too like hypertension and a weak heart. Our sister Christine suffered from trigeminal neuralgia. It hurt so much that she decided to seek a more permanent relief. She saw Dr. John Loeser from the University of Washington Medical Center on May 15, 1996.

I'm not sure she knew about a non-invasive alternative and so elected to have the microvascular decompression on May 17.

I cannot understand how the "operative report" said she tolerated the surgery well. She was late waking up from surgery. She wasn't responding to painful stimuli. She was rushed to have a CATSCAN which showed irreversible damage to her brain. An infarct. Essentially, in her own words, " Dr. Loeser didn't do me any favor by keeping me alive." My sister never walked again. She could not balance because she had ataxia and she had to relearn how to talk and swallow. Her entire right side was paralyzed. She lost her good eyesight. She now had double vision and only in one eye. She used to love to read. My family mobilized to send one member a week to the University Hospital. We all arranged to get time off from work and make travel arrangements, hotel arrangements to be with Christine in the most horrifying moments of her life. She woke up in a body that no longer would function. She was terrified and depressed. We tried to rehabilitate her for a year and a half and take care of her at home. It was too much work. We're growing older and have health problems too. One Christmas when I had her for ten days I gave her a bell to ring whenever she needed me. I lost 12 pounds and my stomach ws a knot by the end of her stay. In the middle of the night, we'd fall on the floor trying to pivot onto the john. Sometimes it took over an hour to get her back on the bed. She had to go to a nursing home. It was difficult. She didn't mentally or emotionally belong there.

She died July 21, 2000.

I want people who suffer from this disease to research every possibility. I want them to know that maybe there is a non invasive alternative or pain management strategy. Think about Christine's story before you elect surgery.

Name: lisa
Email: lisae0608@aol.com
City: phila
State: pa
Country:
Diagnosis: : Trigeminal Neuralgia
Treatments: topamax no relief, neurontin 1200mg still no relief
Comments:
Date: 08/13/00

Story
Hi, my name is Lisa and I am a 29 year old who has been suffering with pain since November 1999. I had sinus surgery to remove a cyst from my sinus on the left side of my face, 3 weeks after the surgery was done I developed horrible pain on my face left sided, to the point that I could not even keep my eyes open or look at bright lights. The surgeon said that the pain was from the swelling related to the surgery and he put me on multiple antibiotics and prednisone (steroids) to help decrease some of the swelling, needless to say this did not help. After suffering for about 5 months after the surgery I had another CAT scan done which revealed another cyst had formed only this time it was affecting my vision to the point that I could not see clearly out of my left eye. I had the surgery repeated and he told me after the surgery, I would have no more pain because that was what he thought was causing all my pain. Well another month went by and still no relief at all. I had to keep calling him for pain meds since I could not take the pain anymore. I asked him more than once if it could be a nerve problem and he always said no. Finally after I called him for about the 50th time he said that I might have a disorder called trigeminal neuralgia and suggested I see a neurologist which I did and the neurologist concluded that it was TN. He started me on topamax and I had no relief after being on it for about a month, he changed my medicine to neurontin 100mg 3x day since then I have increased it to 1200mg a day. The past week or so my left side of my face is swollen and reddened. I feel as if I was hit in my face and it feels like it is so swollen that I feel as if it is deformed but it is not. This is hard to deal with, I have depression also which makes things even worse and harder to deal with. I have 2 young children and I just feel so washed out most of the time that I feel bad that I don't do more with them. Right now I am typing this and my face feels like it is going to fall off. the weirdest feeling ever. there are some days the pain gets so bad that over the hours it just continues to intensify to the point that I need to go to bed. I have had to leave work because of it. does anyone out there know if sinus surgery can cause this problem? if so please please let me know. I am looking for answers to this puzzle that I have been dealing with. Please feel free to email me at anytime. I would appreciate any help or support that I can get from anyone. Thank you and I wish all of you well and understand how you feel. Lisa

Name: Gina 
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis:  Trigeminal Neuralgia
Other: Trileptal the NEW Drug
Treatments:
Comments: It's STILL Working!
Date: 08/07/00

Story
Good Morning Brave and Heroic Angels: This is my second posting on the new drug Trileptal, by Novartis Pharmaceuticals. I am bowled over by the amount of mail I have received questioning this new miracle drug. I am honored to help all of you. My mother is 84 and a sufferer. She has suffered for years. Tegretol lost its power after a certain amount of time. Her attacks became more severe. And I got myself into therapy, before my depression over watching this "thing" called TN destroy our family. Our past neurologist was absolutely no help. All he ever wanted to do was surgery. After praying for a miracle, I was given one. "Trileptal". We sought measures and took my mom to the Clinical Professor of Neurology in Manhattan at NYU Medical Center.) If anyone would like this miracle workers name, please e mail me.) The first week of starting the Trileptal, my mother's system was trying to adapt. It was not a pretty sight for the first week. But...after a week she started to change, and the drug started to work. It is NOW 4 months and she is pain free. Ever once in a blue moon she will get a mild "jab" as she calls them, that lasts about 2 seconds. But they are not painful, just annoying, as she describes. Absolutely NOTHING like the severe pain she was experiencing the past year. I am happy to tell you that she is a different person. Her life is back and so is MINE! I beg you all to ask about Trileptal. Speak to your doctor and call or e mail the TN Association. And if anyone needs more information about my mothers progress or questions about Trileptal, please do not hesitate to call on me. God Bless all of you. Love, Gina

Name: Nancy
Email: IBeYFriend@aol.com
City: Hendersonville
State: TN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: I apply heat
Comments: a nightmare we never wake from
Date: 08/05/00

Story
I have now had TN for over 3 years, I am at the end of my rope, I can't take the pain much more, I have been taking Hydrocodone, for so long now that does help, and all the other things that I have been reading, what they take, well I have used them all too, some broke me out in a rash so bad was at ER for 5 hours. Our lives are not normal, we are not happy, I have found myself waking in the mornings wishing I had not, yes I pray to die. I am going to ask my doctor the next time about Percocets, someone said they helped them, does anyone know or if they work, and how strong should I ask for? I am so wore out from pain and depression, my doctor told me the other day depression and pain goes hand in hand, I wanted to scream, Oh Really, I did not know that, my Lord, I have not been in a cave, I have faced pain and depression for 3 + years now, I am sick of it, I want a life. anyone that would like to write, to talk, please God do write me Nancy

Name: Terri
Email: byoda79@hotmail.com
City: Maple Ridge
State: BC
Country: Canada
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Treatments: Tegretol/Neurontin
Comments: Tegretol, fatigue, allergic reaction, hvnt started Neurontin yet. Scared
Date: 08/04/00

Story
Hello Everyone, Thank God for all of you and this site, because without it I would probably still be undiagnosed. I am tentatively scheduled for MVD for Sept/2000. I am absolutely terrified and want to cancel. I have tried Tegretol for 6 months but couldn't get up to a high enough dosage. It made me so fatigued and I had developed a burning sensation on the top of my head. I also have a 2 yr old and work full time and cant afford to be wiped all the time.. Now I have been prescribed Neurontin and I am dreading the side effects. I am sorry if I sound negative but I am tired of being tired from pain and meds. My personality has become snappy and not much makes me happy anymore. Except I love to Garden. That is where I find my serenity. Has anyone heard of Dr Kaufmann out of Calgary, Alberta? Has anyone had surgery done by him? I would appreciate any feed back. I am not sure of all the questions I should be asking before having this surgery. Any suggestions are appreciated. I have had excruciating pain on the left side of my face since 94. Not sure why? Had braces put on in 93. Had a car accident in '94 where I hit my hit against the front window. '94 developed a bad infection after having braces adjusted. Was brutal. Now here I am in pain 24/7. I am severely depressed cause I am not the girl I used to be, I am in so much pain, I cant sleep, concentrate, speak some days. My left cheek pulsates with pain. My left eye aches like there is an ice cube behind it. Sometimes my teeth hurt. Upper and Lower. The left side of the back of my tongue and throat throb and ache. My ear aches 24/7 and when I turn my head to the right I feel pain in my ear. Sometimes I feel like someone is pinching my earlobe very tightly. My heart races so fast I cant speak. I am 34 and feel 100. This is for Nick and our son Adam, the loves of my life. Should something happen to me that I don't come back the same person after the surgery. Please know that I love you with all my heart. Nick you are the most kind and patient person. I love you so much for all your encouragement. Forgive me for my bad days, I need your support so badly. Adam, Mommy cant wait to have more energy to take you out more often to play. I love you my little star. Thanks to all of you for your stories. God Bless. Terrilee Maple Ridge. Canada

Name: Kers
Email: Private
City: Leighton Buzzard
State:
Country: United Kingdom
Diagnosis: Atypical Facial Pain
Treatments: Glycerol and alcohol injection.
Comments: Pain increased after injection.
Date: 08/03/00

Story
After having intrusive dental treatment I have facial pain on both sides. I have constant pain in teeth and face. Trying to be controlled by tablets. Have had laser treatment, acupuncture, and injections. Pain is VERY severe and life revolved around pills. Nothing takes pain away! All treatment tried but to no avail. Wind, eating, talking, brushiing teeth, all cause pain to increase. Lead a perfectly normal life before dental treatment 2 years ago. Hell now!!! Pain is constant. Does not come on in flashes like T.N. Causes pain down face to lower jaw, jaw joints, ears, upper teeth. After having injection lower lip on right side is numb and tongue too. Pain now in lower jaw and very painful in the jaw joint when the muscle goes into a spasm. Next appointment for hospital check 24th October. Have no other road to go!!!! Help please?

Name: Cat
Email: Private
City: Joppa
State: Illinois
Country: USA
Diagnosis: Trigeminal Neuralgia,  NICO
Other: Tic deleroux
Treatments: latest: Decompression of the fifth cranial nerve
Comments: no pain!!
Date: 08/03/00

Story
I have had this pain since I was 19 years old & am now 44, so for 25 years I have suffered greatly! In the early years I couldn't get a diagnosis from any doctor. I had teeth pulled, tried every type of medication, eventually after getting a diagnosis I had radiofrequency done with no relief of the pain. When I was in my late 20's I even considered suicide. Thank God I had a supportive husband & had 3 boys to raise or I may have done it. The years passed & with each episode there was longer times between episodes but when they came they got worse & worse. This last time I have found a doctor who gave me some hope, I had decompression of the fifth cranial nerve...actually they put in teflon felt spacers between the nerve & blood vessels to keep them from touching. I have to say, this is brain surgery & recovery is slow going but I haven't had any face pain since!!! I am confident that it is going to work but realistically I have to give it more time before I can say it is 100% gone. If you are suffering from this you know the elation when you aren't hurting & I want everyone to feel this relief! There are some answers out there!

Name: Jerrie F.
Email: Private
City: Fredericton
State: NB
Country: Canada
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol,Neurontin,Lamictal,Acupuncture
Comments:
Date: 07/28/00

Story
I was diagnosed with TN five years ago, it went away but returned with a vengeance in December 1999. I had severe pain in the top of my head, forehead, eye, temple, cheek, nose, upper lip and the roof of my mouth. The pain would move from one place to another but never more than two places at a time with the roof of my mouth acting as the trigger point. I reached the point where I could not eat, talk, wash my face, brush my teeth, etc without severe pain. I was diagnosed early by my family doctor and referred to a neurologist. I had a sinus infection prior to the the reappearance of TN and my neurologist believes it may have damaged th sheath of the Trigeminal nerve. My first treatment was with Tegretol and it was helping. However, I developed a severe fever which I thought was flu but turned out to be a serious reaction to the medication, I ended up in hospital with my liver enzymes and blood count out of whack and was there for a week until my condition stabilized. I was eight weeks recovering from the reaction to Tegretol. I was then prescribed Neurontin and the a combination of Neurontin and Dilantin. It had little if any effect. I was then placed on Lamictal. It seemed to help some but I was still suffering a lot of pain. By accident I found out I had two uncles who had TN and had little success with any drug but had found relief with acupuncture. I then went to a acupuncturist and after the second treatment found significant improvement and after six treatments had virtually no pain and reduced my Lamictal from 150mg per day to 25mg , Unfortunately, the TN came back two weeks later. I went back to acupuncture and after three treatments the pain disappeared again. However, I find if I reduce my daily dosage of Lamictal below 100mg per day, the pain starts to reappear. The acupuncturist says acupuncture changes the message patterns to the brain reducing the pain and gives the nerve an opportunity to heal itself. It is difficult to determine if the relief form pain was due to acupuncture or the combination of acupuncture with Lamictal. In any event, I can now live a normal life. My pain is limited to my temple and cheek and has been reduced to a few times a day and only a few seconds at a time. I am convinced the acupuncture was largely responsible for the improvement.

Name: Kelly
Email: Private
City: Toronto
State: ON
Country: Canada
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol, acupuncture, Neurontin, baclofen, Percocet, Oxycontin, Radiofrequency Lesion
Comments:
Date: 07/27/00

Story
I was first developed TN in 1995 when I was 20. Needless to say, it was 2 years before I was diagnosed because I was always told I was too young to have TN. For the first 3 years, I was offered Tegretol but always refused because I felt the pain was better than the side effects. However, the pain finally became too intense to deal with on my own. I was put on Tegretol and within 3 months was taking 1800 mg / day. I was barely able to function and the pain was still there. My neurologist at the time was a jerk and told me that I should not be concerned with the side effects (quality of life) and just be happy that I was experiencing some relief. That was the last time that I saw him. I decided to try acupuncture and had a very positive experience. I was able to decrease the tegretol until I was off of it completely and remained virtually pain free for 6 months. Then last fall the pain returned with a vengeance and I had to go back on medication. I was taking 3200 mg / day of Neurontin and having to supplement it with Percocet. I was finally referred to a neurosurgeon and he suggested trying Baclofen in addition to the Neurontin, before I tried surgery. I was initially on 40 mg / day and was pain free for 2 months. When the pain came back, he increased my dosage to 80 mg / day. No luck. I had to start on the pain killers again and before my surgery, I was taking 80 mg / day of Oxycontin (in addition to the other meds) and still having pain. Four days ago, I underwent Radio Frequency Lesioning. I am happy to report that I am pain free, however having to deal with numbness in my face. I am also scheduled to see another neurosurgeon in the fall who performs MVD. This is because, my RFL is supposedly temporary (approx. 12 months or less) The only reason I had the RFL done was because I could not get into see the other neurosurgeon for 3 months and could no longer function normally on all the meds. I am praying that my pain will stay away.

Name: Janice H.
Email: Private
City: Trussville
State: AL
Country: US
Diagnosis:  Trigeminal Neuralgia,  Glossopharyngeal Neuralgia
Treatments: Neurontin  300 mg/3 times per day
Comments:
Date: 07/24/00

Story
After having a severe case of flu in Jan. 2000. I never felt I "got over" the flu. Had sinus infection, headaches that made me want to sleep for ever --very severe pain--, ENT treated me for sinus infection in April. In June, I experienced sensation of drops going in my ear. Stinging sensation moved to my lips, mouth, throat, jaw, nose and eye. Treatment has been Neurontin, 300 mg. 3 x per day. Some relief, but the stinging is constant. Bad days I take pain medication. Getting depressed and I've only had this for 6 weeks.

Name: Nola B. V.
Email: nvoie@aol.com
City: Buckeye
State: Az
Country: USA
Diagnosis: Trigeminal Neuralgia,  Anesthesia Dolorosa
Treatments: Cranial rhizotomy, Gamma knife, Glycerol inj.-one more I can't think of now.
Comments: The last 10 or so years of my life have been living hell
Date: 07/16/00

Story
I had my surgery in Pittsburgh by Dr. Janetta in June of 1995. The pain was gone immediately. The Anesthesia Dolorosa came on just as fast. In November of that same year, the pain returned, now worse than ever. Since the Anesthesia Dolorosa (we'll call A.D.) was so bad the thought of further surgery was unthinkable. All of 1996 was pure living hell. The next step was the Gamma knife, the results were no better. By the beginning of 1997. I was in constant pain. Excruciating, never-ending pain. The third process, (the name which eludes me now,) was done in the early part of 1997. Again the outcome was the same. In April of 1997 I had my last and (hopefully) Final proceedure, The Glycerol injection. That process was so painful that even though I was under sedation, I cried out in pain. Once more I garnered no results from my ordeal. I went through that summer and fall in the worst time of my life. Not only was I suffering from the pain of trigeminal neuralgia, but the A.D. was as bad if not worse than the T.N. In October, for some unexplained reason, the pain vanished, and I have been pain free for the last two and one half years, and although the pain is gone the A.D. is as bad as ever. It is constant, day and night, twenty four hours a day, seven days a week. I have burning, itching numbness on the surface of my skin, but the feeling of worms crawling on my face. My mouth and tongue are numb and food tastes terrible. To make my food have any taste at all, I have to either have it very sweet, salty, acidy, or sour. I use way too much salt, and to compensate for the sweetness I have learned to use aspartame. Lots and lots of aspartame. There are times when the pain is so sharp I throw off my glasses and grab at my face as if I were stung by a bee. I have sores in my nose and ears, which I scratch open, because they itch, but are numb to the touch. There are times when I scratch my scalp raw and don't realize it. The vision in my right eye has become blurry and at times I have double vision. People will look at me and say "What's the matter" and you learn to just slough it off. Despite all of this I work every day and carry on a fairly normal life, as  normal as can be expected) I am now 63 years old and I can't imagine spending the rest of my life like this. But, you learn to take it one day at a time, and hope that somewhere down the road there may be some miracle medical breakthrough I know I take the drug Nortriptyline for my Fibromyalgia, and it is supposed to calm the nerve endings. Perhaps some sort of megadose of something similar will be available. I can only hope for the future, As it is now, there are no promises.

Name: Alison D.
Email: Private
City: Shalimar
State: Fl
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: Tegrotol, Neurontin, Dilantin, vascular decompression
Comments:
Date: 07/16/00

Story
I  had my first episode of TN in 7/95.I thought it was a tooth, and went through many dental procedures, including 3 root canals and an extraction. After about a year (my dentist never did figure out what was going on,) my family doctor referred me to a neurologist, who diagnosed me immediately. She tried me on Tegretol, which helped, but made me so nauseated that I couldn't get out of bed, at times. Neurontin was utterly useless and Dilantin helped a little, but not much. In 8/98, I underwent vascular decompression surgery. A blood vessel was wrapped around the trigeminal nerve. After 2 months, the pain came back, but it is less often and less severe than before the surgery. There are still times when I can't talk normally or eat. I have gone for as long as 4 months, pain-free. One of the worst things about this condition is that none of my acquaintances has ever heard of it & either think that I have TMJ or am a hypochondriac! I wish each of them could have just one bad episode, so that I could gain some understanding and respect! In spite of everything, I have only missed about 2 or 3 weeks of work, because of this problem, in the last 5 years. I hope, through this Web site, to be able to talk to some fellow sufferers.

Name: Jeanne
Email: misty@hereintown.net
City:
State:
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol  Neurotin  Baclofin  dilantin
Comments: Allergic to Meds
Date: 07/15/00

Story
I have had TNG since 1992 with attacks coming in the spring and fall for about 5 years. Then it lasted for about 4 months per attack, and it came more frequent and with harder pain. I was in a truck accident and now it is 24 hours a day and the pain is unbearable. I work full time and can no longer stand the pain. I contacted a Doctor who is to do MVD. I need to talk to someone about this who has had it done and I need to know the cost of the procedure per hospital and doctor my insurance only covers 80% so I need to know what the cost will be to me. Any info would be appreciated. Also need to know the outcome of the operation, is the person as good as before TNG or what were the result of the surgery. Also what are the side affects to the surgery. I can't take any of the Prescription drugs. The surgery is to be real soon, and need info now please

Name: Karen S.
Email: sandstrom@greene.xtn.net
City: Greeneville
State: TN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, 3 MVD's
Comments: The Pain is Back!
Date: 07/15/00

Story
I was diagnosed with TM about six years ago. My history involves 3 MVD's and much Tegretol. My last MVD was in 97. I went relatively pain free until a couple of months ago. Don't get me wrong, I never did stop the Tegretol. I was always aware of "my nerve" and needed to re-dose with Tegretol to varying degrees according to "episode". No pain like what I'm feeling recently again though. Just had another MRI but wont know anything until return visit to Nuerosurgeon Monday. I guess I never really thought of this as "chronic" until recently. My last MVD was suppose to be the one. My Neurosurgeon used another type of Teflon and "packed" the are so that the nerve and blood vessel were not "mobile". I guess I really thought I'd never be back here again. I remarried and moved to another state since then (TN) and I don't think I'm in the hub of medical advancement. I'm seriously wondering about the Gamma Knife tx I've been reading about but I think I would have to travel and duke it out with our Insurance Company to cover it. MVD's did not work long term for me. This is not to say they won't for someone else. I never do get acclamated to the side effects of the Tegretol. I'm determined to get drug and pain free somehow. God Bless Us all ! Our pain is horrible. I'm going to find a way to fix this. Somehow..

Karen

Name: Vicki
Email: Viconmax@aol.com
City: New York
State: NY
Country: USA
Diagnosis: Atypical TN,  Atypical Facial Pain, odontalgia
Treatments: Medications (not successful). Considering Surgical Procedures.
Comments:
Date: 07/13/00

Story
I began having severe dental pain in my late forties (25 years ago). I had, at the time, various consultations but there were no positive findings and I was told that this "nameless thing" was a "somatic depressive equivalent." Being quite depressed at the time (which was also an era of psychosomatic diagnosis)I accepted this explanation without question. I was taking Pamelor (similiar to Elavil) for depression and that did help somewhat. My very competent Orthodontist did not think that my problem was psychiatric but was sure that the problem would be resolved when I lost those teeth (which I did) and the teeth were covered by a denture. This did not happen and I can only tolerate the denture for relatively short periods of time (after which there is extreme pain in the area. I have tried all the recommended medications e.g. Tegretol, Klonopin etc. which seem to induce a severe state of depression which resolves when I stop them. I have not been depressed for many years now but I (and everyone else I knew well) have just accepted the fact that I was "crazy." My quality of life has become so dominated by my symptoms that I have thought of suicide and since I can't do that have been wishing for an early death to escape this suffering. I had asked my Oral surgeon if he could do a nerve block but he said that was impossible because of danger to the whole trigeminal nerve. It was with great relief that in browsing the internet I came upon a description of "Odontalgia" and discovered that I have a real illness which also afflicts other people! I am now investigating Neurosurgical procedures and have contacted a Neurosurgeon for a Consultation ... and that I'm no longer "Crazy."

Name: shlomit
Email: shlomitbibi@hotmail.com
City: Tel Aviv
State: il
Country: ISRAEL
Diagnosis: Trigeminal Neuralgia,  Occipital Neuralgia
Treatments: chiropractics
Comments:
Date: 07/10/00

Story
Hi My name is shlomit and I had a car accident at 20/7/98 30 minute after I felt a pain in the right eye I was brought into the hospital but the doctors didn't even care about it/ two days letter I start feeling my nose, extrit ear, problems with opening the jaw and my lips in pain and the pain is getting higher as I am speaking. I haven't take any medical treatment because the doctor's can't point their finger on my pain so I have been doing a little acupuncture and chiropractic and it helps but only for the moment please would someone tell me what happed to my face that i'm suffering so much

thank you who ever you are please get in touch whith me shlomitbibi@hotmail.com
shlomit bibi emek ayalon 17 TEL AVIV p.o box 67224 ISRAEL

Name: maureen m
Email:
City:
State:
Country:
email
DiagnosisL
Treatments:
Comments:

Story

Name: Griff
Email: kfgbuttons@altavista.com
City: Pfafftown
State: NC
Country: USA
Diagnosis: not sure
Treatments: none
Comments:
Date: 07/08/00

Story
I'm not really sure I'm in the right place. My "disorder" has not been diagnosed, and I'm doing some research on my own to try to narrow down what my problem is to something that will at least have a name.

I fell down a flight of stairs head first about 5 years ago - had no loss of consciousness and x-rays were normal. I fell down the same flight of stairs on my coccyx 2 years ago. (No, I'm not a victim of abuse, just a klutz.)

I mention these two falls because I have a feeling one or both of them created the problem I am now experiencing. On both sides of my head from my ears to the top of my head, I feel a constant tingling as well as a sensation of pressure. Mashing my hands against the sides of my head actually relieves the feeling a bit. In addition, the tingling sensations are felt in other parts of my head, my face, arms, hands and legs. I call it a tingling sensation, but it actually feels more like an electrical shock. It comes and goes, but each time it recurs it seems to get a little bit worse and a little more widespread.

Am I onto something here? If my symptoms sound similar to anything that would fit into the category of trigeminal neuralgia, I would like to know. If not, any advice or direction you could offer would be helpful. This is a very irritating and, at times, downright painful condition. I'm already enduring living with tinnitus (constant "roaring" noise) in my right ear that nothing can be done about. It would be nice to have something that can be "fixed." From what I've read thus far about trigeminal neuralgia, this looks like another case of "living with it" without being able to find real and lasting relief. I hope that's not the case. But at this point, I need more to go on.

Thanks for listening.

Griff 

Name: Gayle
Email: Gabat303@aol.com
City: Carlsbad
State: CA
Country: USA
Diagnosis: Trigeminal Neuralgia,  Anesthesia Dolorosa
Treatments: Acupuncture, Magnets, Vitamin B12
Comments: SUCCESS STORY
Date: 07/07/00

Story
My tale of horror began 11/12/99 when a dentist damaged the trigeminal nerve in my left jaw during implant surgery. Only sufferers of my trauma can relate to the agony of my experience. I went from dentist to doctor trying to find relief. The oral surgeon who removed the implant didn't offer me much information. My left chin was completely numb for the first week. Then the real trauma began with non-stop burning pain. It never left me night or day. I slept very little. I never left the house except to the doctor. I went from dentist to doctor trying to find someone who would even listen to me. I did get information online about surgical treatments, but learned of some bad experiences as well as reoccurring pain. I decided against it. A childhood friend who is a neurosurgeon told me that this injury happens quite often with careless dentists and all dentists really do know about it even though they may not have witnessed it first hand. I started going to an acupuncturist three times a week. Then I started seeing a slight bit of improvement. By Christmas I was in still in such pain, we cancelled our plans and instead, I sat on the sofa and rocked back and forth in pain with my husband comforting me. But by mid-January I could tell I was slightly better to the point I could get some sleep by applying Extra Strength Anabusol on my chin to deaden it. By April, I was greatly improved. Another method my acupuncturist used was magnets. She applied them to my face along the jaw line and on my chin. I wore them constantly and they really brought me a lot of relief as well helping with the healing process. By that time I was going out in public so she applied them in specific places inside my outer ear and I wore them constantly. This is in addition to the acupuncture treatments that I was receiving once at week by that time. I also discovered Vitamin B12 in massive doses is very helpful. I use a brand by Jarrow called Methylcobalamin and it comes in 5000mcg tablets. I dissolve a tablet under my tongue every 3 to 4 days. It has helped in the healing process. The other treatment that has helped me is a herb called hypericum which is the plant name of St. John's Wort but in a strong dosage designed to be dissolved under the tongue several times a day. The brand I used is by Hyland's. However, in my own case, I had to discontinue it as I had with St John's Wort because it can make your eyes hypersensitive to the light in rare cases. If you can use it, it is very helpful to repair nerve damage. The most important thing I want to say about my recovery using natural sources is that it takes patience because your own body is doing the healing. If you are looking for an instant cure, it is not for you. The last but foremost method to my recovery is probably overlooked because it also doesn't bring about instant relief, but it works. I know for sure that I wouldn't be where I am today had it not been for finding a way to get God's healing. I had learned about it 10 years ago when I had nerve damage in my back and suffered severe pain. That time it took me several days to completely overcome a terrible disorder. The reason why many people aren't healed is because it doesn't always come instantly and they get discouraged. There are certainly healing principals that I followed that worked. I also found a church that prayed for my healing and I called them day and night sometimes. It has been 8 months since this horrible thing happened to me and I can safely say I am almost over it, which at the time it happened, seemed impossible. I still have some sensation in my chin and lip, but the awful burning pain has stopped. I have no doubt that I will make a complete recovery very soon. If anyone has benefited by my story and has any questions to ask me, please email me and I will answer anything I can. Have patience and courage. Gayle

Name: Anonymous
Email: Private
City: silver spring
State: md
Country: us
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol
Comments: Need some insight on how to comfort my relative
Date: 07/07/00

Story
This is regarding my mother's sister who is my favorite aunt.and she is really suffering with this affliction and you just don't know how to comfort her, because the medication is not helping because she is always in pain. I call to speak with her and she can barely speak because of the pain in her lower jaw and it is also preventing her from eating and causing weight loss. I'm just frustrated because where you talk with her it hurts to talk. please recommend doctors in texas area specifically Dallas ,Texas because that is where she lives. Help me please.

Name: Gina
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis: TN
Treatments: Trileptal
Comments: It's "WORKING!"
Date: 07/03/00

Story
Dear Brave and Heroic People: I have written in the past to tell you that my mother is a sufferer of TN. After having a bridge placed in the upper right side of her mouth, 4 years ago this nightmare called Trigeminal Neuralgia began. 4 years my mother and my family had been torn apart with her suffering. Tegretol did the job for some time until the doses were increased and made her a walking a zombie. After 2 dreadful emergency room visits, and no OTHER suggestions from our doctors up here we decided to take her into Manhattan to see Dr. G. Gopinathan, MD,FRCP(C) Clinical Professor of Neurology at NYU Medical Center. He prescribed the "new" medication Trileptal, created by Novartis. The medication became available in March. It has now been 2 months and this medication is a miracle. I repeat, a miracle. There was some minor pain in the beginning stages, but now...she is completely pain free for weeks. No drowsy side effects, and was able to be weaned off the Tegretol, at the same time, starting the Trileptal. PLEASE look into this new medication. If any of you would like further information, please do not hesitate to e mail me. I would be honored to help you all that I can. God Bless each and every one of you! Gina Wehmann

Name: "17"
Email: Private
City: Auckland
State: Akl
Country: New Zealand
Diagnosis: Trigeminal Neuralgia
Treatments: epilim 500 and gabapentin   3oo  
Comments: damaged from dental work
Date: 07/02/00

Story
Titanium implant damaged my trigeminal nerve

the only pain relief was from the above drugs. This happened 4 years ago . Not sure if the damage was done by the surgeon or the dentist drilling the implant to place the crown onto the implant.

Name: Mona
Email: Cosmogrl36@hotmail.com
City: Mobile
State: Al
Country: USA
Diagnosis: Unknown
Other: Nothing confirmed yet
Treatments: Imitrex,Mineral Ice,Ice Packs,Heating Pad
Comments:
Date: 06/27/00

Story
I am new to all of this. I am 40 and my pain just started in Dec.99. It came on sudden with horrific pain along the right side of my nose and extended across my cheekbone to my upper and lower jaw. Sometimes the pain is also in the roof of my mouth, to the corner of my outer ear and into eye and forehead. I went to the Dr. who diagnosed a Sinus Infection. After 4 different Antibiotics and a Ct Scan they sent me to an ENT. He prescribed another Antibiotic and Prednisone. When that failed to work he sent me for another CT Scan. Now he is sending me to a Neurologist. In the 6 months that i have had the pain i have only gone 2 days without pain. Mine lasts anywhere from 30 minutes to hours and sometimes to days. It feels like someone has stuck a knife in the side of my face and is twisting it. I have been on my knees in tears from the pain. My kids end up having to take over the house for me because i can't function. When my husband is home from work he has to take over. The Dr's have given me pain pills to help with the pain but they don't work all that well. I have been using Mineral Ice on my face and that eases the pain enough that i can function. I also suffer from Migraines and have been using my Imitrex for the pain. We moved to Alabama in 98 and i was beginning to wonder if that had something to do with it. If anyone has any info to pass along or questions that would be helpful for my Neurology visit i would greatly appreciate it. Mona

Name: "Ken"
Email: kbl84@hotmail.com
City: San Francisco
State: CA
Country: USA
Diagnosis:: Atypical Facial Pain
Treatments: Biofeedback, X rays, 2 Sinus surgeries
Comments: I know how it feels like, and how much we all wanna get rid of it...lets help each other.
Date: 06/26/00

Story
My face pain is similar to the description of the Atypical Face Pain in this website. I only feel the pain or sensation on my left face. It seems to be more on my cheek bone. The sensation is like something pressing against my cheek bone with force. I also have this weird sensation that feels tingling and crawling all over my faces. I tried to explain my face pain to my family doctor, but it didn't seem like he knows what's going on in my face. He sent me to many different doctors that help people with face and head pain kind of problems. He even sent me to an allergy doctor which has been giving me allergy shots for almost 2 years now! Nothing seems to be helping because I still have the pain and weird tingling sensation. I had 2 sinus surgeries because they thought that I had a sinus infection. They did x-rays, and even sent me to BIOFEEDBACK experts, which seems reasonable for this kind of illness. Unfortunately, Biofeedback never helped. My face pain is weird, sometimes I only feel it when I think about it. If I don't think about it, I don't get the pain. I am not sure if it's brain related. But sometimes I cannot control it which means it still hurts when I don't think about it. I have also taken many kind of medications which never helped a little. My doctor had my spine checked and he said it bends a little. I read one of the stories that someone wrote in this website and he said that the spine is related to face pains, which adds more clues to the cause of my face pain. I am currently under no medications, no treatments, no nothing because I have totally given up on this illness with my doctors. They don't seem to get what my problem is. But I am still trying to research this disease and hope someday me or someone will find the cure...I feel all your pain. We should all live in peace without such a terrible problem. If any of you wanna talk to me, email me at: kbl84@hotmail.com! I would love to hear from all of you especially the ones with the similar face problems that I have.

~God Bless you all~

Name: "Sheba"
Email: Private
City: Brown Summit
State: NC
Country: United States
email: Private
Diagnosis: Unknown
Other: still waiting on diagnoses
Treatments: still waitng on proper diagnoses
Comments: would like to talk with anyone who has this problem
Date: 06/25/00

Story
2 years ago it started with severe headaches, visual problems, poor balance. Dr. said then it was some type of neuralgia. headaches got better but still had ticking in muscles around eyes. Now i am having trouble with a burning pain in my chin and jaw. I do grind my teeth all the time. But I also started taking meds. for asthma the same time this all began. That is why no diagnoses. But looked up this website in hopes to find help. Dr. says not my meds. causing pain. Scares me, I wonder am I having a heart attack or what. This burning pain is unreal at times. It started in the center of my chin and radiated back to my ears. It also hurts when I chew. Dr. checked my heart and it looked fine, even though my blood pressure did go up some during the first attack. Right now blood pressure is fine( husband is fireman, checked it for me).But both side of my jaw hurt. And I get this feeling like i am congested in my neck and chest. I know this sounds weird, but if anyone can help I would real appreciate it.

Name: Trudi
Email: TNT49@centuryinter.net
City:
State: MI
Country:
Diagnosis: Atypical TN, Fibromyalgia
Treatments: Narcotics
Comments:
Date: 06/24/00

Story
My story began in 1993. It started out with terrible headaches. Then it moved to the nasal area in 1994. In 1995 it hit the entire face, BOTH SIDES!!!! First I started out at my GP's thinking it was a sinus infection. NOPE. Then on to an EENT. I was then Dx with TMJ, which I still have. The TMJ was a run off of Fibromyalgia and ATN. I was fitted for a bite splint. It only made the pain worse. I ditched that. I was then referred on to a TMJ specialist. He Dx me with Fibromyalgia, I went through 8 weeks of physical therapy. This only intensified the pain. I was then referred to a neurologist and was Dx with Atypical TN. I went through all the meds as I'm sure all of you have. I suffered with chronic pain, 24/7. No end in site. I started a private internet support group called "I FEEL YOUR PAIN". EVERYONE IS WELCOME IN MY GROUP I've come along way since 1993. I have 60 members in my group. I started a private group because so many people who suffered did not want to be in groups that weighed their PC's with e-mails everyday. I do alot of research for my members, and lend them the support they need. I finally found a doc that was not afraid to prescribe morphine to end my pain. I now have my life back again. I am a group leader for Mid MI, affiliated with the Trigeminal Neuralgia Association. I helped to get the Michigan pain bill passed so that Dr.'s can prescribe narcotics for those who suffer from ATN. If you are in need of help and have no where else to turn you can e-mail me and I will do my best to help you. My prayers are with all of you who suffer from this beast, called Atypical Trigeminal Neuralgia. In my internet group we welcome all facial pain disorders. Trudi

Name: Tom V.
Email: Private
City: Fort Dodge
State: IA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Trileptal, Amitriptyline, chiropractor
Comments:
Date: 06/24/00

Story
I am a 43 year old architect just recently diagnosed with Trigeminal Neuralgia. I first noticed symptoms in January 2000. They began with a spontaneous sharp "twitch" in my left cheek. At first I didn't think anything of it, but then I started to get a constant, dull ache in my upper left jaw. I thought it must be a toothache and hoped it might go away. It didn't. I finally went to my dentist in March and explained that I must have a bad tooth. I really have to give my dentist credit, he couldn't find any apparent physical problem and as a precautionary measure put me on antibiotics in case I had some type of gum infection. That not being the case, the pain just kept getting worse. Again I went to see him explaining that I must have a bad tooth, although I couldn't tell which one. Thankfully, he correctly concluded my teeth were not the source of the problem and referred me to an Ear, Nose and Throat specialist. After a full set of head X-rays he determined that there was no sinus infection, but put me on Prednisone in case there was some other type of inflammation. The constant pain continued to get worse, going from being a nuisance to the point where it gave me a headache and made it hard to concentrate at work. Then in April I had my first real "shock" pain. It occurred at 2:00 in the morning and sat me up straight out of a sound sleep. I didn't know what was happening or if it would stop. I had 4 more attacks that morning, each lasting for about 30 seconds. I immediately went back to the EN&T doctor and he referred me to an oral surgeon. The only problem was that they couldn't see me for another month. Knowing that I couldn't wait that long I went back to my dentist. He called in some favors and after consulting with another oral surgeon referred me to a neurologist, suspecting it might be Trigeminal Neuralgia. The neurologist confirmed the diagnosis but after my first MRI thought there might be a tumor at the left trigeminal nerve location. A second MRI also showed the same bright spot. The scans were sent to the University of Iowa hospital neurological team who concluded that there was no tumor, but there was slow blood flow through the area and that was the cause of the spot. My neurologist has started me on Amitriptyline which seemed to keep the shock pains under control but still left me with the constant pain that would worsen when I tried to eat or talk. He then put me on Trileptal and that has taken away 95% of the pain. The only real problem I have now is that the tip of my nose is my trigger spot. I never realized how many times I accidentally hit my nose throughout the day. Now, each time I do it about sends me through the roof. I have also started treatments from a chiropractor that I heard has treated TN before. I was somewhat disappointed to find out he doesn't have much experience treating it but he is confident he can help. I don't know if it will do any good but I would be really upset if I didn't try and found out later that it would have worked. I have only had this disease for 6 months now and feel that it is still manifesting itself. If anyone else has had similar experiences to mine I would be interested in hearing what I might expect next or in the near future. Also, I haven't read much hear about the trigger spots, and if they can be brought under control with the medications. So far, I still have the same pain intensity when I touch my nose, even though the constant pain is pretty much gone. As for the new drug, Trileptal, the only side effects I've noticed are drowsiness and some very minor short term memory loss, both of which are very acceptable considering the alternative.

Name: "Sue"
Email: Private
City: granite city
State: IL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: MVD and Gamma Knife
Comments: Please keep address confidential
Date: 06/23/00

Story
I first experienced the pain from trigeminal 7 years ago after a lengthy dental procedure. It started out only in my jaw but gradually moved to all three nerves. I could handle the pain in my jaw, but when it extended to my entire face, especially when it would shoot into my eye and forehead area, I gave in to the MVD (brain surgery for decompression of the nerve) in March of '97. I would have attacks that I describe as "pain seizures, that feel like my entire right side of my face was being blown off with a shotgun and I was living through it over and over and over again." There were nights when all my husband (who is so supportive and I'm so thankful for) could do was try to hold me. No pain medication would touch it. If I doubled up on my hydrocodone, it might make me drowsy enough to eventually fall asleep -- but that's all. I was on the maximum dose of Tegretol and Neurontin, but that didn't work (plus Tegretol lowered my white blood count to 2.3 which is dangerous). The surgery was no fun but was worth it because for TWO YEARS I had absolutely no pain and was on no medications. But in April of '99 it hit me again, and I was shocked because I thought it was gone forever. I was put on Dilantin, Neurontin, Baclofen, and pain medications (even a controlled substance which I can't remember the name), but the pain only kept getting worse. Finally, I agreed to Gamma Knife last December. My surgeon said that it might take months, if it worked at all. This was performed at Barnes Hospital in St. Louis. There was relatively no pain in the procedure, but immediately after it I was in greater pain for about two weeks; but that hard of pain gradually got easier to a less pain (if there is such a thing with trigeminal). Over the last 6 1/2 months I've been on a roller coaster ride -- weeks of pain (some very bad) -- then followed by weeks of very good days. My surgeon said this was normal. Right now I'm on 9 Neurontins per day and 3 Dilantins -- I reduce the dosage when the pain starts going away each time, and I have bad pain in my face when I touch it (washing or putting on my makeup gets bad)and sometimes when I eat or brush my teeth. But it stops now when I stop touching it. Considering what I was going through, this is a major breakthrough. I would do Gamma Knife over again if I had to. I'm waiting for the pain to go away again and each time it stays gone a little bit longer. My family has been through so much with all of this. My 13 year old son has become angry and bitter because of seeing what I've been through (I would try not to scream through the attacks because of him but it was always impossible). My husband is an angel. If not for him and my faith in God to see me through this horrible pain, I would never have made it. I've lost my job that I had for 5 years as an Executive Secretary because of missing so much work with this, so now I'm a stay-at-home mom -- but now that I'm feeling so much better, I'm enjoying being home. I have to watch my Dilantin level because it gets so high and then I'm in danger of other problems (got to 45.7 at one time and between 10 and 20 is the normal range.) When I look back at where I have come from and to where I am now, I am very thankful. I pray that the pain completely leaves me, but in the meantime I thank God that I'm at least to this point. Gamma Knife sometimes takes up to a year to fully work, and that's what I'm counting on. For anyone that has considered Gamma Knife, I say go for it". I'm almost 7 months down the road, and I have definitely improved.

Name: "Donna"
Email: Private
City: Inverness
State: Fl.
Country: Citrus
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol
Comments:
Date: 06/23/00

Story
I am so frustrated. My first episode of TN was 2 1/2 yrs ago. I relate it to a visit to the dentist who proceeded to clean my teeth way above the gum line; my teeth were numbed but, I could still feel him working on them; this didn't seem right to me. Anyway a few days later I was referred to a neurologist who knew what it was immediately and prescribed Tegretol 100mg. The pain went away the next day and I continued the Tegretol for a week or so. I remember that I saved the medication 'just in case'. This last Saturday, out of no where I get the pain again! I remember frantically looking for the Tegretol until I found it two hrs. later. I still had the pain Sunday aft. and it was unbearable! By Monday I couldn't wait to call my Dr. Well to my surprise he had retired!! I had to beg the nurse to give me an appointment. Three other Drs. took over and one was in. I was so frustrated as they didn't know how much pain I was in and I couldn't understand why they didn't know! I finally went in and they gave me a Rx for 200 mg x 2times per day. Well, the meds aren't working this time. They have dulled the pain a little. I am walking sideways and speech a little slurred. My husband seems frightened. I called the Dr. back and their ans. was to increase the meds by another 200mg per day. We live in a small town plus I don't have any Insurance and I don't have any confidence in these Drs. who just came to town. it is now almost a week without relief and I don't understand why the meds worked the first time and not the second! Plus, I read on the net that this can become more frequent and never go away!! Is that correct? Never go away!! I can't imagine that! Please, I would like info and also why the meds wouldn't work now. Thanks, Donna

Name: "Tiffany"
Email: Private
City: morristown
State: tn
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: surgeries five times
Comments: 52 years of torment   agony   some relief
Date: 06/21/00

Story
When I was 30 years old with two small children, the first stabbing, needle like stabs of more like a sewing machine going up and down in center of face, and it spread to my nose, upper right side of teeth, bringing tears to my eyes. First treatment was an alcohol injection which lasted until 1971. I was working as a secretary as well as keeping my home of family. This treatment numbed my right side of face until the death of my husband in 1971. From then on, it was a series of years of treatments with rhyzotomy (lazer) into face via tv screen, putting me to sleep in three different stages. Each one held awhile. Doctors prescribed tegretol and othere drugs. The last treatment in 1978 seems to have held with the addition of taking xanax amitriptyline, blood pressure medicine (tenex) and elavil at bedtime and I sleep the entire night through. It is ncessary for me to take a tegretol at night (sometimes two) and sometimes one in the morning. There is always a crawling, movement sensation. Now, I have this pain in the right eye. When I had it operated on last was in West Virginia Univ. Hosp. in Morgantown, WV. Sometimes the entire right side of my face gets very sore and I use Vicks Salve on the entire side of my face and around hairline. The pain often reaches into my hairline and to top of head. Any information anyone can send me to find relief, I would appreciate. Thanks

Name: Roxana C.
Email: rbcatdoa@aol.com
City: St. Louis
State: MO
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments:
Date: 06/18/00

Story
I had facial pain for about 10 years before I was diagnosed. I am allergic to Tegretol and Dilantin, so for now, I am just living with the pain. I am going to see a pain/injury specialist that someone else with TN went to and said it helped. I am about to give up on treatments. I have gone to a neurologist, neurosurgeon, ENT, ENT/Neurologist, oral surgeon and by primary physician. The whole ordeal is very frustrating.

Name: Preston Witgenstien
Email: PAWBIO@aol.com
City: Panama City
State: FL
Country: USA
Diagnosis:  Trigeminal Neuralgia, Atypical TN, Atypical Facial Pain, NICO
Treatments: Several surgeries; only helpful one was numerous bone debridements of 2 tooth sockets, which did have the bone cavities as described in NICO. These treatments would reduce the pain sometimes to 0 but it would only last from a few days to 2 weeks. As soon as the gum would heal over, the pain would return.
Comments: I have been researching this for 6  1/2 yrs. and the more I learn, the more complicated everything becomes.
Date: 06/18/00

Story
Since Jan. 1994 I have been fighting severe right sided facial, head and eye pain. In the beginning I described the pain to drs. as a severe right sided head ache, with pressure and pain in and behind my right eye and stabbing pain in my temple. For 1 1/2 yrs. nobody could explain what was going on or even come up with a diagnosis. Finally an ENT did a nerve block injection in the right infraorbital nerve and within less than 2 minutes the pain was 98% gone, replaced by numbness. I was so relieved to have the pain gone but unfortunately after the injection wore off after about 5-6 hrs. the pain returned just as bad as before. When I told the ENT that the pain was gone after the nerve block, one option he gave me was a neurectomy, meaning cutting the nerve. Besides losing sensation and muscle control on the right side of my face, I learned that something that happens often after this procedure is a condition called Anesthesia Dolorosa, in which the pain can be worse than it was before the nerve was cut. Also, it is common that the procedure must be repeated after about 2 yrs. because the nerve will try to grow back together. The other options were alcohol injection, which basically kills the nerve or glycerol injection, which has the same effect. None of these options were acceptable; the Dr. did not tell me about any of the possible things that could happen......not only could happen but was likely that one of them would happen. I spoke with many people on the internet that had these procedures done and almost all of them said the same thing......don't let them do any of those procedures under any circumstances; too many people I spoke with had terrible things happen to them. I decided not to have any of the above mentioned things done to me; I have been on every medication used for ATN including Tegretol, Dilantin, Neurontin, Amitriptyline, Alprazolam and almost every pain medication there is. The only pain meds that helped at all are opiate type drugs. Nothing else did anything. Even morphine barely helped, although some pain meds would help some, nothing was ever very effective and the meds that did help, I would build up tolerances within several months and first the dosage would have to be increased then when that no longer helped, my Dr. would try something else. I am now at the point that I must go back on meds that I have already been on because there is nothing new left! I never used to take any kind of drugs, not even aspirin. I was always worried about becoming addicted to the pain meds but if the pain is low, I do not take anything nor have a desire to take anything. If the pain is low for several days in a row, than I do not take any pain meds. Besides, I decided that if I were to become addicted to something then I would have to deal with that when that time comes, even if I need help to get off of a med. The only thing that matters now is to keep the pain bearable. I am no better off now than I was 6 1/2 yrs ago. If anyone has any info/ideas/advice please let me know. Thank you, Preston.

Name: "Daelken"
Email: private
City: Quinte West
State: Ont
Country: Canada
Diagnosis: : Atypical TN, Atypical Facial Pain, Anesthesia Dolorosa
Treatments: specialized chiropractic and cranial sacral
Comments: combination has reduced pain by 40% in 8 months
Date: 06/16/00

Story
I had long-term pain in my neck, for several years. Then I injured my shoulder. A few years later, my jaw was overextended during a lengthy dental procedure. Following that, I had pain in two lower molars for two years. No problem could be found with the teeth. Periodically, my ear would become blocked, for no reason, and my hearing would be reduced almost to zero in that ear. All this was on the right side. I was also experiencing digestive and abdominal upsets, again, for no apparent reason. In April of 1999, the pain in my ear and jaw and shoulder all combined. I was tested for heart problems, had chest x-rays, and ultra sound was done on my abdomen. All these tests, and blood tests showed me to be in perfect health. My doctor said I might have a touch of neuralgia. A TOUCH! The pain was excruciating! I had also experienced a brief period of numbness in my right cheek, which the same doctor suggested was a slight case of Bell's Palsy. Soon, the numbness returned, and remains constant, along with a burning, tingling sensation in my cheek, upper and lower gums and right side of my tongue. I saw a regular chiropractor. He determined that my spine was torqued in the lumbar region. I also had a slight scoliosis in the thorax region. My neck was curved, and my head is tilted and twisted. However, he tried to correct the problem with standard manipulation adjustments. That made me nervous, and I only let him try it once. I was concerned that any extra twisting could cause further damage. He then tried acupuncture. It helped reduce the pain somewhat, but only for a short time following each treatment. After the sixth treatment, there was no effect. In the meantime, I saw an oral surgeon, who suggested there was some jaw joint problem, but he referred me to a neurologist because of the numbness. They thought I had a tumor. An MRI showed no tumor, but did show that a section of my trigeminal nerve was inflamed. I chose not to take any prescription drugs. I felt there was more to my problem than TN Fortunately, I found a chiropractor who uses a specialized form of adjustment called Network Spinal Analysis. It is a precise, low-pressure adjustment along the spine which produces astounding responses in muscles throughout my body. The muscle spasms in my face became less frequent and less severe. The shock-like episodes have almost ceased. I feel my pain has decreased by 40% after 8 months of treatments, once a week. In addition, I have seen a massage therapist who is trained in cranial-sacral therapy. I have seen her five times, so far, and the therapy has been helpful in terms of releasing muscle tension I believe my pain is being caused by the misalignment of my skull on the top vertebrae - the atlas. Combined with that, my other cervical vertebrae are twisted. Furthermore, the shoulder injury is pulling on my thorax, adding to the overall distortion. I have some symptoms of pain under my jaw and in my throat, also. My neurologist discounts the connection of my problems to my spinal distortion, but it makes sense to me. I think there is a possibility that TN and other facial neuralgias could be linked to spinal problems. I urge others to consider a professional assessment of their spine. The TNA information I received recently mentioned Upper Cervical care as a viable alternative treatment option. Other people are finding the same thing I have found. The spine is connected to TN and facial neuralgias! I

Name: John
Email: jchurchill@ns.sympatico.ca
City: Port Williams
State: NS
Country: Canada
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments:
Date: 06/12/00

Story
I have suffered from spasmodic TN for the past 10 years. Nothing works other than waiting for it to go away, which it does for weeks or months. Last fall while in the middle of a bout, I had an endoscopic examination of my esophagus (for unrelated reasons). To put me out, I was given valium intravenously. After coming back to life during the rest of the day, I realized that my TN was much better. In fact, over the course of the next day or two it disappeared completely. Unfortunately, the pain has returned (6 months later). I had my doctor prescribe valium and took 15mg for 5 days. During that time, the pain gradually subsided. Rather than stay on valium I did not ask for a refill; the pain is less severe but revisits at times. If it worsens, I will explore the possibility of having an intravenous treatment of valium. Has anyone else had similar experiences? Another question: I have trouble with the lower tear duct in the eye lid affected by TN. A specialist has suggested a rather gruesome operation to reconstruct the tear duct system and canal. Is there any evidence that TN can affect tear ducts? Thanks John Churchill

Name: Barbara
Email: barbara_adams@aici.com
City: Hamilton
State: OH
Country: USA
Diagnosis:: Occipital Neuralgia
Other:
Treatments: None yet
Comments: I would like to correspond with others who have Occipital Neuralgia and or Trigeminal Neuralgia.  I'd like to find out about treatment options for Occipital Neuralgia.
Date: 06/12/00

Story
I've had Trigeminal Neuralgia for 15 years. I had Microvascular Decompression surgery 1999 and it was about 85-90% successful. I had TMJ also and had upper jaw surgery to fix that. I was just diagnosed with Occiptal Neuralgia today and am interested in in corresponding with others who have it and especially treatments for it and what works. Barb

Name: Sandie
Email: buddah@zfree.co.nz
City: Palmerston North
State: Manawatu
Country: New Zealand
Diagnosis: Atypical TN, Atypical Facial Pain, NICO
Other:
Treatments: Alternative therapies only
Comments: If only we knew for sure what it is. Have differing opinions!
Date: 06/10/00

Story
Hi there. I'm 36 years old and had pain in my jaw for 10.5 years. I have been in a few vehicle accidents which resulted in injuries to my neck, then in 1989 I had my 4 wisdom teeth extracted. The left lower was infected pre-surgical removal. Since surgey in 1989, I have had pain in and around the left lower wisdom tooth site/ in jaw. Pain and siffness in the left side of my neck. With pain an elevated white blood count. On occasions, redness on left cheek, fullness on left side of face.Pain in my L ear. pain is inflammation like, with ocassions of the quick sharp shooting pain. Some professionals suggest the possibility of a osteonecrotic cavitional lesion in the #38 (lower left wisdom tooth) area, following EAV testing, my past history and a xray.Others say atypical facial pain or neuralgia. Dental work/ 'extractions' in quad since= much pain!Love to hear from others with same problems. I have since stuck to alternative therapies.Contact =buddah@zfree.co.nz.

Name: Deneece
Email: Tweet--thaing@webtv.net
City: Lander
State: WY
Country: U.S.A.
Diagnosis: Not sure
Treatments: Amitriptyline
Comments: Not sure what happened...Will it happen again?
Date: 06/08/00

About four months ago, I woke up with a terrible pain and pressure in my upper cheek. It extended down my cheek bone to the area above my mouth. My pain was quite different than the pain described here, because it was a dull ache. It actually felt like someone had punched me in the face really hard! I kept looking in the mirror to see if there was bruising or swelling, becuase it felt like there would be or could be!

I went to the doctor, who looked to see if it were a sinus infection or ear infection (?). He determined that there was a nerve 'problem' and perscribed amitriptyline. He didn't fully explain anything, just showed me where my nerve extended and said that I may have a 'little nerve damage'.

I took the med at bedtime, and within two days noticed a slight difference (meaning I could talk a little without feeling like quasimoto). After about two weeks I felt completely normal.

I do not know if I suffer from the same thing as the others here, but I know how I felt, and I know what worked for me. My fear is that maybe this starts out the way mine did then comes back?! The doctor was so uninformative, and this is the first sight that I have found regarding this, so please feel free to respond and give me information that could clarify this.

Thank you, and good luck to all Deneece

Name: priti mathur
Email: priti@mathur.org
City: danville
State: ca
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol and Dylantin
Comments: Did not help
Date: 06/06/00

I had a glandular swelling while eating on the right side of the jaw (submandular gland - salivary gland). The xray of the gland showed a stone (calculas) in the salivary gland. I resisted the operation suggested for removal of the stone. After a dose of antibiotics the swelling used to disappear for a while. This happened for aprx 3 years on and off. The antibiotics just provided temporary relief. Then I had a severe pain with the swelling becoming hard. I tried homeopathic treatment hoping to avoid the operation suggested. Finally I had to undergo the operation as the gland had hardened. The doctor found that fibrosis had formed due to dried up pus. The lingual nerve had to be handled to remove the fibrosis. After the operation there was a burning sensation with slight numbness (heavy tongue). I was suggested different drugs like tegretol and Dilantin to overcome this problem. But there was no effect. I have also been taking Vitiamin E (400 IU) and B-complex. It is now 1 year and 6 months since my operation and there has been no change in the burining sensation. I have recently started homeopathic treatment as no drug was helping at all. I stopped the tegretol and Dilantin after trying different potencies for 1 1/2 year as it was not helping the burning sensation and I felt there could be some long term effects to taking these drugs. I am really miserable and tired of this continuous burning sensation (on the right side of the tongue). I am hoping the homeopathy treatment works. I would love to hear if there is anyone out there who can give a suggestion or who is also going through the same symptoms.

Name: james m.
Email: jimmym@istnet.net.au
City: perth
State: w a
Country: Australia
Diagnosis:  Trigeminal Neuralgia,  Atypical TN
Treatments: various medications
Comments:
Date: 06/02/00

Story
i have suffered from the atrocious pain in the side of my face for over twelve years, doctors in the u.k. and here in Australia have prescribed various medications...but none have ever worked for long,i have suffered so bad over the last year,i cannot eat,talk,wash my face, shave,brush my teeth,comb my hair ,go out in the wind,and many other normal things,without suffering pain..i saw a specialist finally, he says all that is left is surgery to the brain. i an awaiting an m i r scan then surgery ,i am somewhat scared of the complications that can arise from this surgery.i.e., a stroke or facial paralysis, but i cannot stand this constant pain anymore,it is better to try anything now, just to escape from years of torture...i am glad to find this site and realize i am not alone in this agonising hell, that i suffer.

Name: Bob D.
Email: rdudleysr@yahoo.com
City: Monarch Beach
State: CA
Country: USA
email_private:
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, Gamma Knife
Comments: Gamma Knife 16 months ago was successful
Date: 05/31/00

Story
I was diagnosed with TN 15 years ago. After 3 months it went away to return 4 years ago. Tegretol was used to control most of the pain however the dosages had to be increased to the point I had great difficulty concentrating and thinking clearly. I had a GK procedure done at Hoag Hospital, Newport Beach, CA 16 months ago and have been pain and medication free ever since.

If anyone would like more information about my experiences, please contact me.

Name: robert
Email: robbi52@aol.com
City: bellmore
State: ny
Country: usa
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: tegretol
Comments:
Date: 05/31/00

Story
was diagnosed 2 weeks ago. Symptoms started with numbness by the left eye. To date no relief but am fortunate am still able to function .

Name: Dolores C.
Email: mcro337447@aol
City: Pineville
State: la
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol and now Neurontin
Comments:
Date: 05/29/00

Story
I was diagnosed with Trigeminal Neuralgia in January. I woke up in the middle of the nite with horrible pains in the side of my face( from jaw to ear to temple). Went to the doctor and he diagnosed it right away and put me on tegretol and sent me to a neurologist. Before I could get to him I had another attack, that was unrelenting, my doctor doubled the tegretol and it did not work at all. He prescribed Neurontin and finally after 5 days of Hell ( excuse the word) but can't describe it any other way, I couldn't get out of bed and only laid there holding my face, my Hmo gave in and let me have the Neurontin, later I found out why it is very expensive. I am now taking 1200 mgs and am fairly out of pain, except my teeth still hurt I can't chew on that side . I look back now and see why I went to my dentist the last two years and told him something was wrong with these teeth, he all but said it was in my mind ( Huh!) I pray that this will go into remission or away. I live in fear everyday it will come back with vengeance. I pray that they will continue to research this and find less debilitating drugs or a cure. Know that you are not alone.

Name: ReNee
Email: Private
City: Kiowa
State: KS
Country: USA
Diagnosis: Atypical Facial Pain
Treatments: Predisone and Tegretol
Comments:
Date: 05/25/00

Story
i was hit very hard at my child's soccer practice when one of the other kids jumped up below my chin and slammed into me. it really hurt at the time. jaw aches started approx. 1-2 weeks after this and got increasingly worse. i'm assuming that this is what started my TN. my ear, nose, and throat doctor diagnosed me yesterday 5/24/2000, and i'm to see a neurologist next friday. yesterday, i was given 2 shots of cortizone in the cheek which helped the pain subside for the day, and the ENT doc gave me a prescription for predisone and tegretol. the pain has not been as bad though i have had a few twinges this evening. i worry that every little pain is going to turn into the horrible pain that i've had over the last few weeks. by the way, i was diagnosed with TMJ two years ago and am currently wearing braces for it. do you know anyone whose TN was brought on by braces?

Name: "Ronnie"
Email: Private
City: Mesa
State: Az
Country: Maricopa
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: Tegretol and many medications that make it very hard to function at work.
Comments:
Date: 05/24/00

Name: Dolores
Email: Private
City: Pineville
State: la
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin
Comments:
Date: 05/24/00

Story
I was diagnosed with TN in January, have had trouble with teeth hurting for two years dentist concluded that (it was in my head). Woke up with excruciating pain on the left side of my face, from my chin to my eyebrow. Went to my Dr. and he diagnosed it immediately, he prescribed tegretol and sent me to a neurologist. Had all the tests (NO tumors or no signs of MS, for which I am deeply grateful. Tegretol made me like a zombie, couldn't do anything was so drugged up. Had another flare-up in April, and Dr. doubled dosage and it did not help, waited 6 days in horrible pain to see if it would. I am now on Neurontin (1200mgs) and am pain free, except my teeth still hurt and I can't eat on that side. I have also gained 15lbs in the last month. I pray that they find something to cure this illness. I know how excruciating the pain is and how suicide becomes a question in your mind when it never has before. I live in fear that the pain will return. Please know that you are not alone.

Name: Gina
Email: Bimbo729@aol.com
City: Suffern
State: NY
Country: USA
Diagnosis: Trigeminal Neuralgia
Comments: "My Mother Suffers"
Date: 05/13/00

Story
Dear Brave and Wonderful People: For the past 2 weeks I have become and emotional wreck and fear sleep. It is now 6:20 am.I have just returned from my mothers house. She lives next door. Constant walking back and forth to see if another attack is going to come on. 2 weeks ago my mother had her worst attack ever. 7 hours in the ER before a doctor came in. 6 hours my mother lay there in excruciating pain. 4 years ago my mother needed DENTAL WORK ON THE UPPER RIGHT SIDE OF HER FACE. A BRIDGE WAS PUT IN. She was volunteering in our local hospital, about 2 weeks after the bridge was placed when I received a phone call from one of her co workers. That my mother was getting these excruciating pains in her head. We went to a neurologist and he diagnosed TN. 50mg 4 times a day of Tegretol was prescribed 4 years ago. She is now on 200mg 4 times a day and is a walking "zombie". She is 84 years old and is in perfect health other than this "monster" manipulating her life. I myself am in therapy. If I ever knew what was to bestow my life with this dreadful condition watching this healthy woman turn into a prisoner of hell over this disgusting torturing "THING" that contols her and all you wonderful soals, I NEVER would have believed this! I am so angry that they (the oral surgeons and the neurologists) NEVER INFORMED US OF HOW SERIOUS THIS WAS TO BECOME, AND HOW EXCRUCIATING THE PAIN WAS TO BECOME, AND WHAT WAS TO BECOME! THEY TREAT THIS LIKE IT IS A COMMON COLD. HUH! IF THEY EVER FELT THIS PAIN YOU ALL SHARE I BET SOMETHING MORE WOULD DEVELOP TO RID THIS MONSTER FOREVER! I am here this morning to tell you of the latest "hope" a new drug called "Trileptal". February 2000 it became available. We are NOW going in 2 weeks to a neurologist in Manhattan who told us about this new drug. He said no side effects. Those on it for the past 3 months shared "no pain". Can be weaned off the Tegretol while taking Trileptal. Never give up "hope". I have written thousands of letters to everyone that hopefully someday soon will listen to all you. The newpapers, television, celebrities, radio stations, television news stations, in the "hope" that someone someday will hear all of us in agony and bring us some "hope". God bless all of you. I am forever praying day and night, night and day that a miracle will happen soon enough to rid this "nightmare" this "monster" this "dreadful" thing that captured your lives and my mother's, and all of the families that suffer from this torture called Trigeminal Neuralgia. For more support: TN Association PO Box 340 Barnegat Light, NJ 08006 609 361 6250 fax:609 361 0982 Love you all and God Bless.

Name: Dawn
Email: Dawna73@aol.com
City: East Haven
State: CT.
Country: UK
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Neurotin
Comments: none
Date: 05/11/00

Story
My mother, who use to live with me was stricken by an illness, called TN or atypical facial pain. One day she went to the doctors to have a tooth abstracted, suddenly she was faced with this incredible pain that lasted forever. Her life has been filled with horror and constant pain that has destroyed every part of her life. She no longer works, but collects disability and lives a life of isolation and constant stress. At one point in my mother's life she enjoyed working and going out with the girls, but now she is home bound and finds little enjoyment in life. Consequently, she is no longer able to gain the stability she once had in her life because of the pain and frustration that this illness has caused her. She has been living with this pain for about four years now and was diagnosed at the age of 45. She continues to seek doctors and other professional advocacies to try to solve this ongoing problem. My mother takes Neurontin and other tranquilizers to alleviate the pain, but nothing seems to help her in the long run. My mom was wondering if Elavil is a helpful drug to take to stop this pain? Does this pain go away in time or is it a life enduring struggle? Thank-You. Sincerely, Dawn.

Name: Mary Ann
Email: private
City: Chardon
State: OH
Country: U.S.A.
Diagnosis: Trigeminal Neuralgia, Anesthesia Dolorosa, S/P Craniotomy
Treatments: Past: Baclofen, Neurontin, Topical 10% Lidocaine, Baclofen Cream, Phenobarbital for seizure control,
Comments:
Date: 05/08/00

Story

Name: John Hachey
Email: hachey@jps.net
City: Sacramento
State: CA
Country: USAD
Diagnosis:Atypical Facial Pain, NICO
Treatments: Various pain medications, removal of two teeth, etc.
Comments:
Date: 05/08/00

Story
A few years ago I started to feel pain in my lower right teeth. The pain was at first non-specific, and as it worsened it would feel like virally every tooth, even those that had a root canal, were hurting. When the pain was at its peak, the pain would radiate to the upper jaw as well. The pain was a pulsating pain, corresponding to heart beats. I went through several dentists, and lost two teeth that had nothing wrong with them. I saw a neurologist, an Head, Neck and Throat specialist, a pain specialist from UC Davis, and a dental surgeon. All thought that the pain was TN. But the symptoms didn't quite fit. The pain was never there in the morning. As the day progressed, the pain would start, usually by 4 pm. It would generally get worse and peak around 9-10 pm at night. Every day for years. To make a long story short, on my persistence, my ENT doctor finally sent me back to the dental surgeon, who had previously opened up the gum in the area where I had described the origin point of the pain. He operated again, and this time 'dug' deeper and wider. He found and area of NICO, and a small bone fragment in the same area. The pain was basically caused by the surrounding tissue which didn't know what to do, and grew nerve bulbs, etc. Note that I had had several x-rays, an MRI, etc, and none of these showed the problem. Another symptom: When the pain was at its peak, I could stimulate the 'core' area, or the area where the pain was the worst, and feel 'shocks' flowing through my jaw. It has now been over three weeks since my surgery, and I have had no pain, none what so ever. Thanks God. I was going nuts.

Name: Roy
Email: startrek@groupz.net
City: Aiken
State: SC
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: Neurontin
Comments: similiar stories??
Date: 05/08/00

Story
I have a build-up of scar tissue in my left sinuses & have had two scrapings. The scar tissue returned in a week and a half after both surgeries. No one can tell me how or why the scar tissue returns. It is crushing my infra-orbital nerve leaving me in constant pain. Anyone out there have a similar malady?

Name: ROSE INGRAM
Email: AREEYERI@AOL.COM
City: NORTHLAKE
State: IL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: MVD SURGERY
Comments: PAIN FREE FOR 5 MONTHS
Date: 05/08/00

Story
HELLO I HAVE TRIGEMINAL, {TN} I DID CHOOSE TO HAVE THE MVD SURGERY. THAT WAS 5 MONTHS AGO IT IS NOW MAY 7TH. BEFORE THE SURGERY I WAS ALWAYS HEALTHY,I HAD BEEN GOING TO THE DENTIST FOR DIFFERENT WORK THAT NEEDED TO BE DONE TO MY TEETH ALL OF A SUDDEN I STARTED GETTING REAL BAD PAIN FROM MY TEMPLE ON MY RIGHT SIDE OF MY FACE DOWN TO MY JAW NEAR MY CHIN. I OF COURSE THOUGHT IT WAS DUE TO A BAD TOOTH, THE DENTIST TOOK X-RAYS AND SAID HE CAN FIND NOTHING. WENT TO THE ER AND MY BLOOD PRESSURE WAS NEAR STROKE. ONE OF THE DR. CAME IN AND KNEW JUST WHAT IT WAS. I WENT TO A NEURO SURGEON AND IN THE MEAN TIME I WAS TAKING TEGERTROL, THAT WAS THE ONLY PILL THAT TOOK ALL THE PAIN AWAY. THE NEURO SURGEON SAID I WAS A GREAT CANDIDATE FOR THE SURGERY, HE WAS AN EXCELLENT SURGEON. I HAD NO SIDE EFFECTS FROM THE BRAIN SURGERY. BUT NOW I DO HAVE HIGH BLOOD PRESSURE AND TAKING MEDS. FOR THAT. NOW I AM STARTING TO GET THE PAIN BACK LITTLE BY LITTLE I KNOW IT IS THE TRIGEMINAL NEURALGIA COMING BACK. GOD I WISH IT WAS NOT BUT I DO HAVE TO FACE IT. IT IT STAYS THIS WAY I CAN HANDLE IT BUT IF IT GETS WORSE I WILL START TAKING MY MEDICINE RIGHT AWAY. I DO HOPE SOME DAY SOMEONE FINDS OUT WHY!!!!!SO MANY OF US ARE GETTING THIS IT IS NO FUN, AND IF SOME-ONE FINALLY FINDS OUT THE REASON FOR THIS, MAY BE WE ALL CAN WARN OTHERS TO WATCH OUT NOT TO DO WHAT EVER IT WAS WE DID TO GET THIS, I JUST DON'T UNDERSTAND HOW SO MANY OF US GOT THIS REAL BAD PAIN. GOOD LUCK EVERY-ONE AND GOD BLESS!!!!!!!!

Name: "Charlie"
Email: Private
City: Carson City
State: Nv
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, Neurontin, Acupuncture
Comments: Acupuncture works for me!
Date: 05/07/00

Story
My pain started very suddenly 9 years ago. I was talking on the phone & holding it up to the right side of my face. The pain was so intense I could not speak. The pain continued for days and I couldn't eat. I went to my dentist twice & he could not find a problem. I finally went to another dentist who did a root canal. Afterward the pain was still there. He suggested it might be a neurological problem. I was finally diagnosed with TN. At first the neuro said I was too young (40). I took Tegretol for several years and it kept it under control but I still had pain. I had a difficult time at work because the Tegretol at times made it hard to think clearly. When one of my blood tests came back with a low white cell count I was switched to Neurontin. I did better mentally but it had about the same effect on the pain as Tegretol. I asked my neuro about acupuncture & he said it wouldn't work. I tried it anyway and it did. At first the pain increased but after 2-3 treatments it went away. The pain begins to come back after several months and then I have another treatment or two and it goes away again. I'm so grateful I decided to give it a try.

Name: "Granie"
Email: Privete
City: Hope Mills
State: NC
Country: USA
email_private: Yes
Diagnosis: Trigeminal Neuralgia
Treatments: Drugs
Comments: some not working
Date: 05/02/00

Story
This is a terrible thing to have. The drugs that I take are making me feel so fuzzy headed. I am on 600mg of neurotin 3 times a day and I really can't function right now the tegertol made me feel the same and I have been on that for years and I am scared to stay on that for so long this web site makes me feel that I am not alone anymore.I never even heard of this before I came down with it in my mid thirty's. Thanks for it hope you all give me.

Name: "Moe"
Email: mah99@mediaone.net
City:
State:
Country: USA
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Treatments: 4 craniotomies
Comments: No cure
Date: 05/01/00

Story
1. decompression of 9 & 10th cranial nerve - didn't work 2. rhizotomy of the 9th cranial nerve - didn't work 3. Trigeminal ganglionectomy - couldn't find but parts of 5,7,8 and the nervus intermedious were cut - didn't work 4. Nucleus Chadalis Neucleotomy with C1 & C2 laminectomy, 26 lesions made down the brain stem - didn't work. I've been on MS Contin for over 3 years. I have tried every medication and herb you can possibly name. There isn't any treatment available or left to treat the pain, only pain medication.

Name: Rosemary
Email: areeyeri@aol.com
City: northlake
State: il
Country: usa
Diagnosis: Trigeminal Neuralgia
Treatments: MVD - brain surgery  at 1st i took Tegretol
Comments: lets  talk to each other for support..
Date: 05/01/00

Story
last year i was told i have trigeminal neuralgia after going to the ER in the hospital, because i could not stand the pain any more. When the pain first started i was under a dentist care going through a root canal. The pain started on the right side of my face in my jaw at first then it went from my jaw all the way up to my temple in my head. the er. said to see a neuro doctor so i did and he told me my options, in the mean time i was taking 800mg of tegretol a day. We discussed the MVD surgery, so i chose that instead of living with the medication knowing what it could do to my body in the long run. So on nov. 17th 1999 i had the surgery done and came out of it fine. The neuro surgeon also told me if the surgery was a success the pain will be gone forever, but if the surgery did not work the pain will come back in 6 to 9 months down the road. Well it's been 5 months and last week i had some of the pain back, if it stays that way i can deal with that. BUT if the pain all comes back i know i will be in trouble again dealing with it. i am so scared the pain will come back now. I was pain free for 5 whole months i thank GOD for letting me be pain free for that length of time. Like i said now i live in fear not knowing if and when the pain will come back.GOD bless and everybody take care...

Name: Sandra S.
Email: guystephenson@mindspring.com
City: Marietta
State: Ga
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: using meds: tegretol, baclofen, effexor
Comments: Really glad to find this website and all the info...
Date: 05/01/00

Story
Have written once before and have heard from several individuals which I really appreciate. I ahve had TN for over 12 years. Am currently 54 years old and was diagnosed after 2 yrs of driving my dentist crazy trying to convince him that I had to have a problem with a root canal because of the pain. Fortunately, he was sure I did not but was careful to perform numerous tests, do x-rays, and send me to 2 other specialists without ever taking any of my teeth out or putting me through extensive work to no advantage. He sent me to neurologist who diag within 5 minutes after I explained my pain. She is a good Dr. who stays well informed about all current meds for TN. I am now taking the new time released tegretol. baclofen, and effexor (antidepressant). Most of my pain as always been the jabbing pain that feels like a hot poker just out of the fireplace. The ususal problems with not being able to wash my face, allow shower water to hit my face, blow my nose, touch my face, talk, .....guess I could go on. But now I am experiencing a new pain that is an all the time pain on the left side of my face (same side as with the jabbing pain). It affects my lips, my lower gums and a portion of the upper gums. I am also feeling sensitivity in my tongue. It is really painful and I have already had to increase this new tegretol as well as the baclofen. I generally to pretty well on the meds as long as I am careful to take them properly and timely. Most of the time I am now talking through clinched teeth so that I don't have to move my jaw or lips. I had to leave my job in '93 and received disability for a few years and then my private carrier sold off their disability division and the new company denied the claim. It upsets my very much to have to deal with the insurance co. due to what all they like to put one through especially for this type of claim. Stress is a main trigger for me and since it makes the pain so bad I tend to wait long periods between each correspondence with the ins. co. I am now trying to gather info regarding any individuals with TN who are on disability of any type. If you are would you please take a moment to e-mail me? I realize that many of you like myself are in so much pain that it is difficult for you to think clearly enough at times to bother with correspondence but if you could let me hear from you it would be greatly appreciated. I am trying to educate this ins co about the disease and how disabling it can be if you have a job that requires a lot of concentration, talking, etc... considering the pain and the amount of medications that are consumed each day. Again, I would love to hear from you. Thanks

Name: "Joaquin"
Email: jgazulla@adam.es
City: Barcelona
State: S
Country: Spain
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol+ acupunture sessions
Comments: Better results no pain now
Date: 04/28/00

Story
Hi, this is a message for those people that suffers this terrible situation, Im fron Spain but i can understand you, my mother is been suffering this terrible pain during more than ten years The pain goes and came again , last November (1999) she had a terrible pain during a month she could not even speak, she became older during that period of time, i never seen my mum crying but i asure she is very strong and she did. I was really sad and i start to surf in the web looking for any drug, treatment or whatever to resolve the situation. We tried combined Tegretol with acupuncture, and......the pain disappear" ....after two months ..she stopped the acupuncture sessions the pain come again but no so hard, she did acupuncture again and the pain disappeared again (five session are enough, one a week, and after this first treatment one a month is ok. We know that each case is different but please try it .

Thanks for be there, and i hope you find a solution, im not ill but during many days i cold not sleep thinking in this terrible illness.

JOAQUIN GAZULLA BARCELONA (SPAIN) I hope i can help

Name: "Lilac"
City: NORTTHLAKE
State: IL
Country: U.S.
email: Private
Diagnosis: Trigeminal Neuralgia
Treatments: DECOMPRESSION SURGERY
Comments:
Date: 04/24/00

Story
AT FIRST I WAS TAKING MEDICATION CALLED TEGRETOL AND IT TOOK THE PAIN AWAY THE PAIN WAS FROM MY TEMPLE AND RAN ALL THE WAY DOWN TO MY JAW. I THOUGHT IT WAS BECAUSE OF A BAD TOOTH. IT WAS NOT IT WAS TRIGEMINAL NEURALGIA. I CHOSE THE SURGERY BECAUSE I DID NOT WANT TO TAKE THE MEDICATION THE REST OF MY LIFE, KNOWING WHAT THE MEDICINE MIGHT DO TO YOU.I HAD THE SURGERY 5 MONTHS AGO TODAYS DATE IS 4-23-2000 AND SO FAR I AM PAIN FREE. THE NEURO SURGEON TOLD ME IF THE SURGERY WAS A SUCCESS THE PAIN WILL NOT COME BACK BUT IF IT WAS NOT IT WILL COME BACK IN 6 TO 9 MONTHS FROM NOW.GOD I DO HOPE IT WAS SUCCESSFUL, CAUSE THE PAIN WAS SO BAD I NEVER WANT TO GO THROUGH THAT AGAIN. I WISH I COULD TALK TO SOMEONE WHO HAD THE SURGERY SO I CAN FIND OUT HOW THEY ARE DOING AND HOW LONG AGO WAS THERE SURGERY.

Name: Marjorie F.
Email: myfoster@yahoo.com
City: Merrill
State: Mi
Country: United States
Diagnosis: Trigeminal Neuralgia
Treatments: Carbamazepine 100 mg twice a day
Comments: I believe this medication is helping for now
Date: 04/23/00

Story
I woke up Thursday April 20th with this pain in my ear (or at least thought it was in my ear) I figured I had an ear infection, but I needed to clean my refrigerator real bad that day, but the pain kept up, I couldn't figure where it was at it seemed to be in my ear, yet my temple, and then yet up the side of my head and on top of my head. I had a concussion about 3 years ago so I was begging to think maybe that had something to do with it. At 3:00 p.m. I could not stand the pain any more and called the Dr. they ask me to come right in. So I left right away, carpet slippers and all. I counted the pain 71 times on my way to the Dr. which took me about 30 minutes to get there. She called another Dr. into the office to make sure she was right, and he said it was the same thing. Let me tell you, after leaving her office I headed for the first drug store, and I didn't think I could make it back home by myself, the pain was worse, I took a pill while at the drug store. The Pharmacist was worried about me and wanted to call someone to come drive me home, but I said well I got here so I guess I can get back. But that night it was so severe, it was just jabbing pains right in my ear, it felt like, also radiating up the side of my head to the top. I was crying and screaming with pain, I never had anything like it before. I took 4 pills a day for 2 days then 3 the next day. But since then I have been taking 2 a day. My head does not pain too much now, but I am just scared to death not to take the pills, I am frightened that the pain will come back. I am afraid to talk, bend down, take a shower, chew or anything I am just in a panic all the time. I know stress is not good for this. My husband prayed several days constantly for me and still continues daily for me. I hope they can find a cure for this, so that once you take (one) a dose of medication that it stops it permanently. I am so afraid that this pain can come back so severely at any time. I do have a nickname Bonnie and anybody can write me by calling me Bonnie it is ok.

Name: "James"
Email: Private
City:
State:
Country: Canada
email_private: Yes
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol
Comments: just found out
Date: 04/21/00

Story
i should start by saying that if it weren't for the internet and all you people helping one another i wouldn't have half the knowledge of what the doctor in emerg. told me. thank you all. i have learned so much in such a short time (3 days). Last Saturday i was working , installing a floor in a kitchen when a sharp lightning bolt struck the side of my head. i fell to the floor and thought i hit my head . i work very very vigorous at my job as a flooring installer and can be pretty hard on my body at times. I work long hours and most times don't eat anything. I figured that it was due to tension and stress. this pain continued all day. it was excrutiating. sharp and lasted only a split second. when the pain did not go away the next day and then the next i decided to see and doctor at the hospital because i have no family doctor. I explain my situation to him and said i could have an ear infection. he check me out and had a very puzzled look on his face and said " have you had ear problems before. Is aid no and he replied" I'm absolutely positive that you have a condition called tic douloureux. I had heard of this before and thought it was just a nervous twitch, but had never associated pain with it. My face does twitch and i let out an involuntary "huh" when the pain attacks me. the doctor at the hospital ask me to see if my fiancee's family doctor would see me since we will soon be married. But if not he said to come back and see him in three or four days. I had never seen a doctor have such a worried look on his face. He prescribed me 40 tablets of 200mg of tegretol and some ear drops for a possible infection that he doesn't hardly see. i'm sorry that i can't help anyone out yet with any advice as I'm just being diagnosed but I can tell you one thing. I don't think that doctor should have just prescribed tegretol to me without giving me a little taking to first. its a good thing we have the net. because i would never have known about other alternatives. I am feeling better since i've started on the tegretol but feel a little sleepy at times and i'm having trouble finding words when talking sometimes. having some memory loss. this one is really strange...,i'm feeling all these tingly feelings on my head arms and back. I have scratch them to relieve them but their not itchy. I hope soon that i can be of some help to some one an sorry for babbling about something you've all have probably heard a hundred times. just one more thing though. I should say that I had suffered with migraine headaches from the time i was five to eighteen and they mysteriously went away. until the doctor told me this and I also found from the net that TN can go into remission, I had forgotten that 7 years ago i was receiving these pains for 3 months and then they went away. Why i didn't go to the doctor I don't know ... i not much for going to doctors and hospital. looks like I'd better get use to it now. I'll sign off for now and let you know what happens with all the tests . james

Name: David D.
Email: iidragons2@hotmail.com
City: Ft. Meade
State: MD
Country: USA
Diagnosis: Atypical Facial Pain
Treatments: Everything under the sun.....and moon
Comments: Trying to share experiences
Date: 04/20/00

Story
I am a 34 year old guy that has suffered with facial pain for the past seven years. My suffering started with the extraction of a wisdom tooth (lower r side). At first I had a "numb - burning" sensation. Before long it was a 24/7 pain the is relentless. That sensation was confined to just the mandible area (V3). It has spread to my cheek and the area between my ear and eye. I have had a headache for seven years. . I have constant pain (5 on a 10 scale). Then I have episodes that are so bad that I pass out from the pain. For someone that has a rather high tolerance for pain, that says something. Diagnosis... definitely damaged V3. It has been called chronic facial pain, atypical TN, atypical facial pain, bells palsy, or just plain old neuropathic pain. I don't believe that anyone has decided. All of this diagnosis after only 50 or so attempted blocks. Everything from a simple dental block to Gasserian Ganglion block. Treatments ..... I started on the usual gamit of anti-convulsives. Most of which had very little to no relief. I was a zombie on some of these. I had on interaction with life. A test run with anti- inflammatories was fruitless. Another test with a lidocaine-type neuro killer. No relief. Anti-depressants. No relief. Mental therapy, as much to keep me "sane" as to cope with the pain. Suggestions .... all of the normal fixes (nerve resection, nerve lesioning) have been thrown out. No block has given the results that my doctor wanted prior to a solution. I have wrecked the lives of my wife and son by being in constant pain. I cope to the absolute best of my ability, trying not to express how I feel. I am in the military, and I am not "sick" enough to be discharged. Isn't that a laugh. Well, I just wanted to share this experience.

Name: Barry
Email: Private
City: Houma
State: LA
Country: USA
Diagnosis: Trigeminal Neuralgia, : Facial Neuralgia
Treatments: Medication did not work
Comments: Chiropractic therapy worked.
Date: 04/18/00

Story
Hello, My name is Barry. June 2, 1998, I began getting weird headaches. I was having what most people know as "hair-pain." You cannot touch your hair without extreme pain shooting through the brain, into the eye and jaw of the left side of my head. I went to a neurologist who diagnosed me as having a compressed nerve at the base of my skull. He said other than exploratory surgery, there was nothing that could be done. My employer stopped me from working because I could not wear a hard-hat, which was required to do my job. I went through several doctors and tests of which they all said they had no idea what I had. The neurologist diagnosed it as "facial-neuralgia." There were MRI tests done to make sure of no tumors in the brain. I was checked for shingles. All doctors were baffled. Finally, I went to a Chiropractor who diagnosed it as TN. He tried all types of therapy and manipulations. After a year of that, seeming that nothing would work, he came across a gadget that did the trick. It is about the size of a transistor radio. He called it "Alpha-stem" therapy. There are two wires that attach to the ear lobes, just like clip-on earings. When the unit is turned on, it makes you feel like you had a couple of drinks. You get really woozy. After about 5 minutes on this machine, my "hair-pain" was completely gone. That was from December 16th 1999, until the present time. Absolutely gone! I am writing this on April 16, 2000. I still do have some tension headaches every once in a while and also a little jolt of pain in the brain. But man is it good to not feel that "hair-pain." I could not go out in the wind, wear a cap, or let someone touch my hair. I would sit and cry as my wife would cut my hair. If someone would pass by and touch my hair very lightly, I would wrench in pain. The pain could only be described as a very bad toothache type of pain on the whole left half of my head. My thought in writing is that maybe some of you can get some help with that same little gadget. For more info on the little gadget and what it is you may contact Dr. Rory White White-Mooring Chiropractic Clinic 811 Grand Caillou Rd. Houma, La. 70363 (504) 873-7721 Just tell them that Barry told you to call.

Name: Margaret
Email: pbjmom5@aol.com
City: woodstock
State: il
Country: USA
Diagnosis: : Trigeminal Neuralgia
Treatments: Tegretol
Comments:
Date: 04/17/00

Story
Hi I'm looking for any information that anyone has on

TRILEPTAL (OXCARBAZEPINE)

I'm now on Tegretol but my DR. wants me to go on a study he is doing and use the drug TRILEPTAL any websites or personal experiences on the drug would be helpful. Blessings Margaret

Name: "hotty"
Email: hottytottyhewes@yahoo.com
City: drexel hill
State:
Country: usa
Diagnosis: : Trigeminal Neuralgia
Treatments: tegretal
Comments: tired of being pain
Date: 04/16/00

Story
I have had TN for four years now and really am tired of being in pain. Every morning I wake up having a headache and take some Advil to pull me through the morning. I would never want to go through the pain like I did before it was diagnosed. I didn't want to wake up in the morning knowing what kind of day I was going to have with the pain. I rather suffer pain in my back instead of the face.

Name: DAWN P.
Email: WALLSSIX@AOL.COM
City: TEMPLE HILLS
State: MD
Country: USA
Diagnosis:  Trigeminal Neuralgia, : Atypical TN, Migraines
Treatments: 4 SURGERIES , MANY DIFFERENT MEDS.
Comments:
Date: 04/15/00

Story
I'VE BEEN DIAGNOSED WITH TN FOR ABOUT 9 YRS. MY FIRST EXPERIENCE WITH THE PAIN WAS A VERY FAST AND PAINFUL SPASM THAT TRAVELED UP THE RIGHT SIDE OF MY FACE UP INSIDE MY HEAD. I HAD NEVER EXPERIENCED ANYTHING LIKE IT, SO MY MOM SUGGESTED THAT I BRING IT TO THE ATTENTION OF MY DENTIST. MY VISIT WITH THE DENTIST WAS WEIRD. WHEN I STARTED TELLING HER MY SYMPTOMS SHE FIRST TOOK X-RAYS AND DID A ROOT-CANAL. BUT ON MY WAY HOME THAT EVENING I FELT THAT PAIN AGAIN AND CALLED HER AS SOON AS I GOT HOME AND SHE SAID THAT WASN'T POSSIBLE WITH ALL THE NUMBING MEDS. THAT SHE GAVE ME. SHE SAID THAT I SHOULDN'T FEEL ANYTHING FOR SOMETIME. SO I WENT BACK A FEW DAYS LATER WITH THE SAME PAIN AND SHE KNEW INSTANTLY THAT IT WASN'T DENTAL RELATED. SHE PRETTY MUCH DIAGNOIS ME AND SUGGESTED THAT I SEE A NEUROLOGIST SOON. I WENT TO SEVERAL NEUROLOGISTS BECAUSE I WANTED TO BE EXTRA SURE OF THE DIAGNOSIS ESPECIALLY WITH THEM TELLING ME THERE WAS NO CURE. ALL I KNEW WAS I COULDN'T LIVE WITH THAT PAIN. THE PAIN GOT SO BAD THAT SOMETIMES I WOULD HAVE TO GO TO THE HOSPITAL TO TRY AND GET SOME IMMEDIATE RELIEF. THE NEUROLOGIST FIRST TRIED ME ON TEGRETOL. I WAS ON TEGRETOL F OR ABOUT 5 YRS. THEY KEPT UPPING MY LEVEL TO TRY AND KEEP ME COMFORTABLE. MY OPINION-IT NEVER WORKED) THEN THEY TRIED ME ON DILANTIN-NO RELIEF. ON ONE OF MY TRIPS TO THE HOSPITAL, I WAS ADMITTED AND WAS TOLD BY THE DOCTOR THAT THEY WAS GOING TO TRY AN OPERATION ON ME. IT WAS CALLED THE GLYCEROL INJECTION. I HAD 6 MONTHS OF RELIEF. 6/94-12-94 THE DOCTOR WHO DID THE SURGERY WAS HEAVEN SENT. HE SHOWED SO MUCH CONCERN FOR ME AND REALLY TOOK CARE OF ME. WHEN THE PAIN CAME BACK HE DECIDED TO DO A MICROVASCULAR DECOMPRESSION SURGERY. WHEN HE WENT IN, HE DISCOVERED THAT MY CONDITION WAS MORE COMPLICATED THAN HE ORIGINALLY EXPECTED. SOMETHING ABOUT MY NERVES AND BLOOD VESSELS WERE CRISS-CROSSED AND TANGLED ALL UP. HE STILL DID SOMETHING THAT GAVE ME AGAIN TEMPORARY RELIEF. ABOUT 5 MONTHS. 12/94-5/95. HE THEN SENT ME TO SEE ANOTHER NEUROLOGIST WHO THEN SUGGESTED I HAVE THE GAMMA KNIFE DONE. THE RESULTS WERE ABOUT 7 MONTHS. 8/95-7/96. THEY THEN DECIDED TO TRY THE MICROVASCULAR DECOMPRESSION SURGERY AGAIN. THAT WAS DONE 4/10/96. THE RELIEF PERIOD WAS ABOUT 2-3 YRS. NOW MY PAIN IS BACK SO SEVERE THAT I SOMETIMES DON'T KNOW IF I'M COMING OR GOING. I AM CURRENTLY ON NEURONTIN 400MG. I DON'T SEE WHERE THIS IS WORKING BUT I WILL KEEP ON TAKING IT SO HOPEFULLY SOMETHING WILL WORK. I'V BEEN TO PAIN CLINICS BUT WHEN MY INSURANCE CHANGED I COULDN'T CONTINUE WITH THE CARE WITH THEM. I HAVE AN APPOINTMENT COMING UP IN ABOUT 2 WKS. TO SEE THE NEUROLOGIST WHO DID MY FIRST 2 SURGERIES. I'M INTERESTED IN LEARNING MORE ABOUT THE TN CONVENTION. WHAT GOES ON THERE, OR MAYBE WHAT'S TO BE EXPECTED. I PLAN ON BEING THERE. IF SOMEONE COULD EMAIL ME BACK WITH EITHER THEIR STORY OR SUGGESTIONS I WOULD REALLY APPRECIATE THAT.

Name: Sheri H.
Email: Autters1@aol.com
City: Huntington
State: WV
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: Neurontin, Amytriptoline, Klonopin, Topical medication
Comments: Still suffering but have hope
Date: 04/11/00

Story
I am a 37-year-old court reporter and single mother of a teenaged daughter. I moved to WV three years ago, and I used to be able to laugh at their teeth jokes until I became a victim.

I put all my trust in this one dentist who had a wonderful bedside manner at first. He gave me several fillings and decided to do root canal treatment on a tooth that was still bothering me. Well, after retreating the root canal and trying several different procedures to get me out of pain, and nothing worked, we decided to pull the tooth and put in a cemented bridge. Now, that's when my real problems started.

When he did the cemented bridge procedure, it caused a dying nerve in my molar tooth which warranted more root canal treatment. Well, this root canal was more painful than you could imagine. We eventually had to pull that tooth, too. He decided to make me a cantilever bridge since I no longer had the molar tooth. Well, anyway, I had a dry socket after that and was treated. But the pain was still there. It felt like it went to the next tooth. This dentist's bedside manner no longer was pleasant. He became nasty and mean as he thought I was a difficult patient who just wanted the pain drugs. (That was what I perceived.) He also told me that if I was still having pain, he could always numb me every two hours. I didn't think it was a joking matter.

That's when I decided to go to another dentist. He said there was a dying nerve in the next tooth that was the major one in holding the bridge besides my eye tooth. He performed a root canal treatment on that. When I was still having pain afterwards, he couldn't figure out why, so I then went to another dentist. I couldn't figure out where the pain was coming from, I just knew I felt a lot of it. The next dentist performed retreatment of the root canal. It seemed like I lived in dentist chairs in fear, pain and frustration. This dentist realized there was nothing more he could do for me. he recommended a specialist. Well, in WV, there is a waiting list for specialists. I had to go to Boston for a court reporter's convention before my appointment with the specialist. I went with a "friend" and we stopped in New York City. I remember being in so much pain that I was constantly crying. I saw a dentist in NY who performed yet another root canal treatment on that same tooth. I was hurting even more. Every time I tried to get out of pain, I just ended up worse. Well, my "friend" left me in NY, and I had to have surgery done to remove that tooth and a bone protruding from the tooth that very next day. It was a rude awakening that I had realized that she wasn't a friend and that I had to yet loose another tooth at such a young age. I never made it to Boston.

When I got home, I thought I was feeling pain in my eye tooth, the only tooth left on the left side. Well, I went to a dentist who pulled the eye tooth and gave me a removable partial to wear, which is so horrid. I cannot wear it for more than five minutes without gagging.

Finally, the second dentist I went to told me that he thought my problem was neurological and not my teeth. He referred me to the University of KY Pain Clinic. By that time, I thought I was going to die and that there was no hope for me. I was worried about my daughter and how I was going to support her. I was constantly crying and in constant pain. I felt an electric like jabbing in my mouth, which came about mostly at night. During the day, it was a constant burning pain.

Well, a friend and my daughter went with me to UK, where the doctors were so professional, unlike the first dentist I went to. They worked as a team and tried to figure out where the pain was coming from. I was diagnosed with facial neuralgia or trigeminal neuralgia. They put me on Amytriptoline and Klonopin. It helped me somewhat, and I tried to keep healthy by exercising and I got my appetite back again. I had lost 35 pounds from not being able to eat practically the entire summer.

I then went to the oral surgeon to see about getting implants put in. I felt like I was too young to be wearing that horrid partial. This whole situation has been extremely costly and has messed up my professional and social life tremendously. He agreed to put implants in if I was pain free in the next three months. Well, the next three months my pain did subside. I had some pain in my ear and my jaw and my teeth but it had gone down quite a bit. At one time, I thought it was my bottom tooth and went to the dentist who said there was a cavity there. That didn't help the pain by getting it filled.

Well, I did go ahead and have three implant posts put in. I am waiting on the teeth. I have a lot of pain at times, and at other times it's bearable. I am just grateful that I can still work and take care of my daughter. But my problems were not over.

The implants triggered my neurological problems to come back and now, I am on Neurontin, Amytriptoline and I chew up Klonopin and put it on the areas that hurt, and then I spit it out. When I went to my oral surgeon to get the implants uncovered and get healing posts put on them, that was very painful. He told me I should not be in pain. He said that he was not convinced that my neurological pain would go away. I drove home from the Univ of KY extremely depressed and trying to think of ways to do away with myself. I had never been that depressed before in my life. It was a mixture of fear and depression.

I am so traumatized about not being able to smile, afraid to laugh out loud and I have been hurting so bad that I can no longer go out and enjoy myself or enjoy my job like I used to. I tried massage therapy once and that seemed to have some short-term relief. But I am not going to give up. I will get my smile back shortly, (I hope). Implants have an 80 percent chance, and someday, I hope to be out of pain.

The hardest part about this was my daughter having to see me in this condition. She really didn't understand. Nobody really understood what I was going through. Throughout this whole ordeal, I have found out who my real friends are, and that has been painful in itself. I also found out that there are people out there who care. And thanks for the Internet I have found out that I'm not alone. Good luck to everyone who suffers from this and don't give up whatever you do!!

Name: "better"
Email: Private
City: New Orleans
State: LA
Country:
Diagnosis: Trigeminal Neuralgia, Atypical TN, Geniculate Neuralgia, Atypical Facial Pain
Treatments: tegretol  600-800mg daily,  fiorcet
Comments: had microvascular decompression on 1-19-00
Date: 04/11/00

Story
I began experiencing intense pain in November of 1998. When the pain began, it felt like an intense stabbing pain in my left ear. I soon after developed a stabbing-jolting pain in my left temple, behind my left eye, and down the left side of my face. I was misdiagnosed by about 7 doctors. By July of 1999, I was on the verge of suicide. The pain was present daily. After bieng diagnosed with atypical facial pain/atypical trigeminal neuralgia, I was put on 600 mg of tegretol by my neuroligist. It helped, but I still experienced daily pain and weekly full-blown attacks. I had no definitive trigger point. After a battery of tests, a neurosureon discussed Dr. Janetta in Pittsburg and his procedure, microvascular decompression. He said he was not sure Dr. Janetta could help me, but it was worth a try. Last November, I went to Pennsylvania and consulted with Dr. Kassam, Dr. Janetta's partner. He gave me a 50% chance the surgery could help me 50%. It was definitely worth the risk to me. My quality of life had become very poor. My days revolved around my neuralgia pain. I had the surgery and I am very very pleased with the results. My pain has diminished by about 70%! I have my life back now. As Dr. Kassam informed me, I will be left with "backround pain" forever. I can learn to live with that since the sharp, stabbing pains have noticibly diminished. Honestly, the surgery was rough. I had severe pain and headaches for five weeks, but it was well worth it. I am very thankful for Dr. Kassam and Dr. Janetta! If you have any specific surgical questions, please post them and I will respond. Good Luck and I pray for everyone who has this terrible affliction.

Name: Kathy
Email: katsstorm@yahoo.com
City:
State: Iowa
Country: U.S.A.
TN: Trigeminal Neuralgia, Atypical TN, Atypical Facial Pain
Treatments: Microvascular Decompression, Amitryptline, Tegretol, Dilantin, Neurontin, Baclofen, Clonazepam, Lortab, most pain meds
Comments: Feel free to contact me
Date: 04/10/00

Story
Hi. My name is Kathy. If you have read some of these stories you might have already come across me. I am 29 years old and have had t.n. fro 3 years. I just had Microvascular Decompression done in December. Well it didn't work. I didn't have a blood vessel anywhere near the nerve. So I am back to square one. I have tried most meds available for t.n. but none have worked completely. Right now I am on a combo of Lortab 7.5mgs, Amitryptline 100mgs and Prolixin 5mgs. It seems to be helping. I am not pain free but I am doing half way good. Feel free to contact me if you have any questions about the treatments that I have tried or if you just need to talk. I started a support group in North Central Iowa if anyone is close to me. Email me and I can give you the address and time of the meetings. Good luck to everyone. I wish for you a pain free day!!! God bless!!!

Name: Anonymous
Email: private
City: North Haven
State: Ct
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol 100mg-Accupuncture
Comments: Accupuncture is working!
Date: 04/09/00

Story

Name: "Pistol"
Email: MECJB@aol.com
City: Erie
State: PA
Country: USA
Diagnosis: Postherpetic Neuralgia involving the 9th and 5th cranial nerve.
Treatments: Tegretol, neurotin, dilatin,baclofen, mextil,mouthwash,ear drops, pain pills, nerve blocks, glycerol injections, was tested for morphine pump(allergic) found out the other day it wouldn't have helped.
Comments: .
Date: 04/06/00

Story
I have my condition since 2/11/99. I have not had a day without pain. My condition is called Postherpetic Neuralgia. I had shingles in my mouth and down my throat. It affected my 9th and 5th cranial nerve. What I have is very very rare. I only have to options as far as I know live with AWFUL PAIN for the rest of my life or have an operation that my doctor has only done once and the other doctor who has done more (3 or 4) was his teacher and is retired. There are only 4 doctors who do this in the USA and they probably haven't done anymore than my doctor. I will be sitting down with my surgeon on the 19th of April to get clearer explanations on all the complications and side affects and if it really pays to have it done. I have been on the Internet most of the day trying for other solutions. My surgeon is a good man and I'm sure he wouldn't lead me down the wrong path. But there is always something new. I just need to hear from people who are in terrible pain all day long or anyone who has my problem or just anyone who also needs someone to listen.

Name: Lupe A.
Email: Private
City: Dallas
State: Tx
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Micro decompression surgurey
Comments: Pain free for 2 years
Date: 04/06/00

Story
I suffered with the pain for 2 years before finding out what was wrong with me. My mother-in-law had a friend who had a condition called tic-dolorue. A friend of mine had a medical book that explained what this was and the type of pain. After reading this I made an appointment my primary doctor and showed him the information and he agreed that I had this condition. At that time he told me he did not know what my options were. By this time I had already been to a neurologist and had been on tegratol. I told him that I wanted to stay on the medication as long as possible and that I understood that surgery was just a matter of time. In Jan. 1998 the pain was so intense I could not even sit up. My doctor referred me to DR. SAM FINN at Baylor hosp. of Dallas. He saw me on Jan. 19 and I told him what I thought was wrong with me. He looked at my MRI's and said he could fix my problem. On Jan. 22 I went in for surgery and have been pain free since. Dr. Finn said I had 3 blood vessels putting pressure on the trigeminal nerve, he had never seen 3 vessels, most of the time it is 1 maybe 2. I am very thankful to Dr. Sam Finn for the job he did God Bless him.

In the beginning I thought it was a dental problem with my jaw and went to an oral surgeon who gave me a splint to wear at night. This was no help.

I went to a chiropractor, a friend of mine told me his dad had a problem like mine and a chiropractor had helped him. It did not help me.

I then took part in a bio-feed back study at the SW Medical Center of Dallas. The study was to determine if relaxation techniques would help TMJ type pain. It didn't help me.

I then went to a neurologist who sent me to get a MRI. The report he got back from the lab said they saw nothing abnormal. He gave me 400 mg. of tegretol along with 750 mg. of soma pain pills to control the spasms; this worked somewhat for about 6 months. The problem here was that the neurologist does not read the MRI; he relied on the lab to do review the MRI's.

Not until my friend found the information in her medical book did I know what my problem was. No doctor found my problem and the neurosurgeon was the only one who recognized my symptoms and confirmed my condition when he reviewed the MRI films.

Name: "LMS"
Email: smithlm@unk.edu
City:
State:
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin
Comments:
Date: 04/05/00

Story
I am 27 years old and have suffered tn since the age of 12. I was just recently diagnosed with it after I finally went to see someone because the pains were becoming more frequent and much more intense. Fortunately, my neurologist diagnosed it on the first vist and placed me on Neurontin. I have stopped and started the medication twice because of the side effects, most notably a "cloudy" mind and short-term memory loss. I am too young and have too much responsibility in my career to suffer these effects each day. So, I have stopped it again but just in the last two days since I did, I have had several twinges and just waiting for the big one to hit. I am a little nervous as I read this gets worse as a person ages and that has definitely happened in the last 18 months. I wish I could pinpoint the activities that trigger the pains, but I cannot. It happens when I am just laying in bed or when I am sitting at my desk. I have always placed great faith in doctors but am considering trying natural remedies to see if that provides any relief. I pray that this is as severe as it gets because if so, I can live with it. To all of you out there who are restricted each day, my sympathy goes out to you.

Name: Natalie
Email: mktfs4u@gotocrystal.net
City: mankato
State: mn
Country: u.s
Diagnosis: Trigeminal Neuralgia
Treatments: nortriptlyne, appa/codine,carbmazepin
Comments:
Date: 04/04/00

Story
I started having pain on the 20th. of march, I was going to the dentist the next day to get my teeth cleaned, so i waited. The pain was oin my top and bottem molars on the left side. when he did the exame he could find nothing wronge. so I thought it was all in my head,[no pun intended]. The rest of the week the pain would comt and go starting with pressure in my ear and jaw sometimes very strong other times managable. That fri. I felt pretty good, when I got home from work I had an attack of pain that I thought I would pass out. I called urgent care at the clinic they were able to see me right away. When the Dr. came in he started to tell me what I was feeling. I was so releived, till he explained what I was up aginst. He put me on an antiviral drug and told me to follow up with my Dr. I saw my Dr. on the following wed. She took me off the antiviral and put me on nortriptyline. She wanted to also put me on tegratol but I didnt want it, I had an aunt that was over medicated on that drug two years ago and died. So I went home and started the nortriptyline. By thurs. night the pain was unreal, Icalled the clinic on fri. a.m. and got the first Dr. {mine had the day off}. SO he put me on 400mil. of tegretol a day. I felt liee I was out of my body, very out of it. But the pain did lesson. I have now been on the drugs for five days, it has gotten a little better, but I still dont like the way I feel. I also have shooting pain in my left ear, my Dr. said it is all a part of this condition. In my case there is a family history but none as bad as mine. I felt very alone until i found all of you, thankyou! It turns out I have had symptoms for years just not all togeather so someone could put it togeather. On my lower jaw on the inside of the bone it feels like I have a bruse does anyone else feel like that? At this time I feel a lot better but still feel twinges of pain. A friend of mine has a friend with this condition and she was but on a new drug with very good resaults, it is called trileptal, is anyone else on this? it is not in the 2000 pill books but I found it on line and it sounds much better on the body then tegratol, I am going to ask my Dr. when I see her next week. I ran off the 26 pages I found and will bring to her. I am also tempted to try bee theropy. They sting you with honey bees, I found a good site with a lot of information beehealthy farm. at aol.com. At this point I think bee stings would be less painful, and less side affects then the meds. I just want to get back to feeling like me with no pain and no groggyness. I miss going out with my friends, having a drink or two, not having pain. I know you all understand. thankyou for being here, good luck, I will let you know what my DR. says about trileptal. Natalie

Name: "Boater"
Email: Private
City: Sandusky
State: OH
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol and Dilantin for past 5 months
Comments: Little improvement with medications
Date: 03/27/00

Story
I have suffered from TN for 10 to 15 years, but never severe enough for medication until last year. Was on Tegretol alone and then Dilantin added because of severe pain. Dilantin helped but made me "goofy". Discontinued it but still having marked pain with eating, etc. Have seen 2 neurosurgeons, one wants to do microvascular decompression and another a neurectomy. I am 86 but in excellent health. I have to have something done, but what? Balloon or injections? Surgery? Anybody have any suggestions.

Name: vicki
Email: private
City: Seattle
State: WA
Country: USA
Diagnosis:  Atypical Facial Pain
Treatments: massage therapy
Comments: Don't discredit this as an option
Date: 03/27/00

Story
In 1996 I had what they called percussive pain in my upper left molar. That was the beginning. they tried to put a crown on and I went into crisis, had a root canal, tried the crown, found another root and did the root canal again, fought sinus infections, ear pain and then eventually took out the tooth and....the pain continued. It was never the tooth. Saw a doctor and was diagnosed with Atypical Facial Pain. DUH! CT scans showed nothing. I was then put on amitriptyline...I slept a lot and gained weight but it did help to control the pain that never went away. Meanwhile I was treated for TMJ and was fitted with a mouth guard. By now I was without a tooth, twenty pounds heavier and slept with a mouthguard. Not the romantic picture! Barometric pressure changes seemed to effect me as well. Finally I was sent to see an ENT who checked out the ears, nose and throat. She felt my neck and told me I had the tightest neck and that she thought I would benefit from Deep Tissue Massage Therapy...she used it herself. By now I was willing to try anything. Well...this therapist has worked my neck and shoulders, upper back my jaw and inside my mouth and I am finally showing continued improvement. I am off meds except an occasional Excedrine Migraine. The muscle that runs along side the trigeminal is what she massages the most. This isn't a gentle massage, but it is non-invasive, isn't a drug and it is helping me. I now know the muscles to compress with my fingers when the pain begins and I can generally stop it from accelerating. It may not be your answer, but it was a big answer to me. Give Deep Tissue Massage a chance...it won't hurt you. God bless, and good luck.

Name: Nancy
Email: ntrotic@aol.com
City: Portland
State: OR
Country: USA
Diagnosis: Unknown
Comments: Facial itching and shocks
Date: 03/24/00

Story
I saw a reference in one of the stories posted here to trigeminal trophic syndrome and itching. Does anyone have more information about this? I have not been diagnosed with trigeminal neuralgia, but I suspect something is going on with the nerve. In June 1999 I had some extremely sharp jabs of pain just under my ears, and since September I have been having (among other things such as sudden hearing loss, dizziness, tingling, ocular migraines) some painless little "shocks" in my face around the eye, going into lip and now nose; occasionally a stab of pain into one or more teeth.

What bothers me is the itching--all around the very edges of lips, eyes, nostrils, and in my forehead, cheekbone, sometimes on scalp and behind ears. Some days I hardly notice it, but other times it's very annoying.

Does anyone have TN that started out this way??

Also, is it usual to have one side that is primarily affected and the other side with lesser symptoms?

My problems are obviously trivial compared with the great suffering I have read about here; I know that the jabs I had last June were excruciating and were only bearable because they were very short and very few in number, so I can at least try to imagine how much pain TN causes.

Nancy (age 43)

Name: Jan
Email: speetj@healey.com.au
City: Sydney
State: NSW
Country: Australia
Diagnosis: Anesthesia Dolorosa
Treatments: Tegretol, Depomedtrol 40mg Injections
Comments: The injections really help
Date: 03/23/00

Story
2 years ago I started suffering short stabbing pains from the top right side of my skull going down to the back of my right ear and into the temple region,they would last for most part of the day and the disappear for a week or two. After putting up with this for about 7 months in which time the pain became constant night and day I decided to see a doctor because my poor husband and kids didn't know weather to talk to me or to run and hide when I was having my pain. The MD was brilliant and said I won't pretend to understand your pain but will send you to a Neurologist straight away. The Neurologist sat and talked with me for no more than 5 minutes and then palpatated my skull in the region of the pain and told me I had Occipital Neuralgia. I was sent to the Pharmacy armed with a prescription for Depomedtrol and told by the Doctor to return straight away. He injected this medication straight into the pain area and told me to go home and rest, within 2 hours the pain was gone and it felt so good. I have had to have these injection every four months up until last week when I woke one morning with the same pain but in the left side of my head, I rang the doctor in despair and great pain once again. The Neurologist seen me the same day and using the same medication injected the new pain site, aside from suffering some soreness in the back of my head where he injected me I do not suffer any other pain now. This seems like a great story but there are draw backs 1. I now have to have injections in both sides of the skull every 10 weeks 2. they are very painful and make me cry while they are happening 3. this then brings on a bout of heavy depression and more crying 4. my 3 children get distressed when they see me cry which upsets me greatly, they are only 3,6 and 9 yrs old and should not have to watch mum suffer. The doctor said there is no cure but he has known of cases where the pain has disappeared after 6-7 years. I don't think my poor family can stand this kind of turmoil for 6-7 years. Please if anybody is suffering this way lets talk and exchange pains.

Name: connie
Email: connie2710@aol.com
Diagnosis: Trigeminal Neuralgia
Treatments: tooth removed, tegretol and elavil
Comments: Thank God for the internet!!!
Date: 03/23/00

Story
I am 38 year old female. My pain started about 1997. It felt as though my tongue was stiff and was going to fall off with pain. I went to a dentist and had a tooth pulled. I then started having the SHOCKS and went to the dr. TMJ was what they said. They gave me vicodine and motrin. This did nothing but put me to sleep. It worked though (remission) Until Dec. 15, 1999, I started my 3 week vacation. ZAP I was in pain the whole 3 weeks. I could not eat, talk, brush my teeth (forget it). I processed my food..PAIN. I went back to the dr and again TMJ and gave me vicodine and motrin. My son suggested rubbing Ambasol with a Q-tip all over the left side of my mouth, gums and cheek. This allowed me to take the pills and a couple of bites of processed food. They sent me to an ENT he said TMJ but referred me to an oral surgeon. I was so frustrated by everything I looked up TMJ on the computer before going to the oral surgeon. I found an article that read Pain disorders confused with TMJ! I found trigeminal neuralgia! It was the missing link. I went to the oral surgeon and he said TMJ. I said okay so it is NOT trigeminal neuralgia. He again examined me and LISTENED to me this time and said..Trigeminal neuralgia!!! I went back to my primary dr who started me on the drugs Tegretol and elavil. Since March 15th I have been PAIN FREE. I am scheduled to go to the Neurologist on the 27th of April. I know this only the beginning for me but this site has helped me. If you tell people you have a shocking feeling in your face they look at you like you are stupid or something. I can read these stories and relate. Again....Thank God for the internet and all of you.

Name: Goldie
Email: Private
City: Palm Desert
State: Ca
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol 3or 4 times a day
Comments:
Date: 03/22/00

Story
I have had trigeminal neuralgia for 30 years. I have been on medication that keeps it under control but for no reason, I have had times that nothing can stop the pain. During these times, I have trouble eating, talking, swallowing, brushing my teeth and sleeping. During one episode 2 years ago I lost 25 pounds because I couldn't eat. I have been told that surgery can help but I am afraid of the side effects. I am now having pain on the right side of my tongue that I never had. I am interested to find someone that has had pain in the tongue as well as the pain on the lower portion of the face and jaw area. The last time I saw a neurologist, he wanted to do the surgical procedure. That was 2 years ago. I have been under control with medication the past two years with only 3 or 4 really bad times. The problem with my tongue is the only thing that has been constant. The last really bad episode was 1 month ago. My doctor put me on steroids and pain pills and it really helped. It was a one week do or die effort because I was in so much pain.

Name: Margaret
Email: PBJMOM5@aol.com
City:
State:
Country:
Diagnosis:  Unknown
Treatments: root canals,
Comments: had a sinus cat scan done showing nothing
Date: 03/20/00

Story
ANYONE HELP? Hi, I've suffered from facial pain for years. I had always been told it was my teeth so I've spent thousands having root canals, re-treats, surgical root canals, teeth extractions etc. I finally went to my reg. Dr. who said it was a sinus prob.( which it was not). He then sent me to an ENT who said I need to see an optometrist who said I need to see another DR ( I can't even pronounce let alone spell) SO NOW here is where I need help, I'm going back to my Dr. on Thursday to BEG for help. I have a HMO so I have to go to him. He already told me he doesn't know what this is. What type of DR can help me? What kind of tests,procedures or meds help facial pain? My symptoms are: pain located on the left side of my face from behind the eye to my lower jaw. My cheek bone aches and the pain seems to then spread into my ear and teeth. When my teeth start in the pain can localize in one or more of them ( only on the left) I do sometimes get a sharp jolt of pain in one area in my bottom jaw otherwise all the pain is dull but INTENSE! I did break that cheek bone when I was a kid and a small piece of plastic was put in. Can anyone point me in the right direction to get some help, where do I start? Blessings Margaret

Name: NeuralgiaGone
Email: Private
City: Boston
State: Ma
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Gamma Knife New England Med. Ctr.
Comments: Pain Free !
Date: 03/18/00

Story
I was in severe to catastrophic pain for 5 years and no where to turn. I was on heavy medications and found it hard to function and slept alot. I was diagnosed with Trigeminal Neuralgia. I finally had to do something so as to live my life. I researched many possible procedures and found that I would try the Gamma knife operation which is non invasive. I contacted Dr Borden at the Gamma Knife center at New England medical Center in Boston mass. The procedure consists of no type of cutting etc.. and pretty much pain free. It has been 5 weeks and I have very little pain to no pain !!! This procedure is about 70% effective for zero pain afterwards. Pretty good odds when we have suffered so much ! Good Luck to you. Sincerely, Don 3/17/00

Name: Alice
Email:  dalska@aol.com
City: New Brighton                        
State: MN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Microvascular Decompression
Comments:
Date: 03/16/00

Story
After suffering for nine years, I had microvascular decompression in December 1997. I have been pain free ever since. I was first given Tegretol and became deathly ill from it. Then Baclofen helped for a while, but not long. I am glad that I finally opted for surgery. I regained strength and energy that I hadn't had while I was on medication .

Name: sunny
Email: mlcompaq@aol.com
City: willow spring
State: nc
Country: usa
Diagnosis: Trigeminal Neuralgia, Anesthesia Dolorosa
Treatments: 2 microvascular decompressions1990,91 glycerol injection
Comments: had it since 1983
Date: 03/14/00

Story
Hi, Has any one had the new endoscopic mvd procedure that only makes a small hole the size of a dime and requires a one day stay in hospital? If so please reply, Also has any one with tgn come down with dystonia of any kind? Dystonia is a movement disorder that can cause uncontrolable facial, neck or body movements. thanks for reply, sunny

Name: anaz
Email: anaz@flashcom.net
City: Rancho Cucamonga
State: CA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Gamma Knife, Herbal Therapy
Comments:
Date: 03/13/00

Story
I had trigeminal neuralgia, averaging 40 clusters per day of electric-like stabbing pain from my top right tooth to my forehead, or several hours of burning on my right cheek to my temple. After my first doctor said I had neuralgia, I looked it up on the Internet and found I fit the classic symptoms of trigeminal neuralgia. A periodontist, ENT specialist, and two neurosurgeons ended up confirming the problem. During the months it took to set up these medical appointments, I elected to try alternative pain treatments. I did not want the side-effects of standard prescribed medication (nausea, mental confusion, lack of physical coordination, liver damage, and ever-increasing dosages). I tried Zostrix, an arthritis ointment with capsaicin (no help); magnetic earrings said to help TMJ (no help for me), megadoses of vitamins B and C (some help, but only for a short period of time). I then tried VENASTAT, an over-the-counter medicine I had used a few years back to cure my varicose veins. For 4 weeks there was no effect, then suddenly I noticed the number of incidences of stabbing pain were decreasing and so was the intensity of the pain. After 8 weeks the number of stabbings and level of pain had dropped 85%. By the 12th week I was down to one stabbing and no burning pain at all. For more information on this herbal therapy see www.venastat.com.

From the beginning I wanted a permanent solution to the TN where I would not have to take any medication. After reading all the possible treatments on the Internet, and consulting with 2 neurosurgeons, I decided on Gamma Knife over Microvascular Decompression. Gamma Knife is non-invasive, can be done as an out-patient, has no side-effects, and a high success rate. Microvascular Decompression on the other hand is brain surgery with 2-6 weeks recovery time, and a slight chance of numbing and deafness. I live in So. Calif. with 3 gamma knife centers near me -- Cedar Sinai in Los Angeles, one in San Diego (www.sdgkc.com), and one in Newport Beach at Hoag Hospital (www.cduma.com). I went to Dr. Christopher Duma in Newport Beach. On the day of the treatment, I arrived at 6:30 a.m. I was put on an IV while being fitted with a metal headband to keep my head still (no pain at all). I had an MRI, then I spent 45 minutes in the gamma knife machine (looks a lot like an MRI), listening to music and relaxing while the painless treatment was going on. The headband was removed (painless), I had a little bit of bleeding that stopped right away. I had lunch and went home. The next day I showered, went to work absolutely pain-free. I never even had a headache, and the TN is GONE! A low percentage of gamma knife patients have a recurrence of TN after 2 years, but others can go 10 years or more with no pain at all. If my pain comes back, then I will consider the Microvascular Decompression, but so far everything is looking and feeling great! Thanks to Dr. Christopher Duma and the fabulous staff at Hoag Hospital's Gamma Knife Center.

Name: Pamela
Email: ims@webzone.net
City: n/a
State: OK
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, and usual Meds for TN-Gamma Knife Procedure
Comments: Had second Gamma Knife a week ago
Date: 03/08/00

Story
I just underwent my second gamma knife procedure bys Dr. Francel with the University-Presbyterian Neurological Institute in Oklahoma City. (33% of individuals may experience a return of the pain) I am still experiencing pain, it takes a while for the effects of the procedure to be felt. I am very hopeful this will stop this "monster" pain from returning. I was fortunate to have found such caring professionals. It has given me something to hold on to. I cannot imagine living life with this intense pain day in and out. The electrical shock like pain is unbearable. It is difficult for anyone whom has not experienced this pain to know what it is like.

Thank you for this board. The individuals whom post and those whom come to read for support, please know you are very special. You each are courageous individuals. Thank you for your support. Please feel free to email me.

Name: Carol
Email: private
City: Tallahassee
State: FL
Country:
Diagnosis: Atypical Facial Pain
Treatments: 5 different Diagnosis treatment no response
Comments: I pray for all the people that suffer facial pain.
Date: 03/07/00

Story
I am a 50 year old white female, and have had 10 years of pain in the face, teeth, and jaw. I have been to every DDS, MD, and Holistic practitioners with no success. Been on all medication for DX of Burning Mouth Syndrome, then DX with T N, then Atypical TN, then Atypical Facial pain, and now Emotional distress, and depression.

I have had all the mercury removed and total reconstruction. The pain is so bad I have trouble eating, talking, and swallowing. I have a discharge in the mouth of a white film, and it is a sticky constant drip in the anterior upper and lower.

I have spent thousands of dollars on MD's, and DDS's and want desperately to find the cause and cure. If anyone has these symptoms or someone who has please email me ASAP. I could write a book about the past 10 years of frustration, and putting my family through the ringer, loss of quality of life, and no social or professional life. Look forward to hearing from anyone soon.

Carol

Name: CORAL
Email: CBOLLINGER@AMIDTI.COM
City: ERIE,
State: PA
Country: UNITED STATES
Diagnosis: Trigeminal Neuralgia,  Glossopharyngeal Neuralgia
Treatments: NERVE BLOCK, GLYCEROL INJECTIONS
Comments:
Date: 03/06/00

Story
It all started 2/99 when I thought I had burned the roof of my mouth. Within 5 days I realized the pain wouldn't be so great. I called the dentist and he saw me that very day. He had the feeling I was getting the shingles in my mouth. I saw my medical doctor that very day and I didn't have lesions yet and gave me pain pills and was the call him the next day to say how I felt Well the next morning was just awful and he made arrangements for me to see a dermatologist that very day. Well to dermatologist surprise I had broken out in lesions. They diagnosed Ramsey Hunt. This just has lead to a pure nightmare of pain and depression. I didn't work for 1 year and just returned 3 weeks ago. Still having a hard time concentrating. Doesn't seem like any treatment works for to long. I was tested for the morphine pump, but was allergic to morphine. Have had nerve blocks, and many glycerol injections. The most recent one on 2/28/00. I really don't know how much more I can stand this. Does anyone have any suggestions? Please help.

Name: Denise B,
Email: algraham@globalfreeway.com.au
City: Parmelia
State: WA
Country: Australia
Diagnosis: Atypical Facial Pain, Occipital Neuralgia
Treatments: Acupuncture, Physiotherapy, Facet Block, Steroid tablets, Morphine, Chiropractic, Nerve Block pending), Amitriptyline 4x 50mg, Tegretol,
Comments: Amitriptyline has kept atypical face pain under control. Nothing else has worked.
Date: 03/05/00

My nightmare on elm street commenced some 18mths ago. I had been off work due to a slipped disc in my lower back, upon returning to work on shortened hours i noticed a pain in my neck, at first i thought it may have been a stiff neck and thought time would heal it. Unfortunately this was not the case, the pain never went away. In fact it got worse, moving into my head and the right side of my throat, into the right shoulder near the clavicle bone and down into my right arm i can only describe the pain as continuous not a stabbing pain but a deep boring pain, i had a constant ear ache and headache and i still don't think that anyone really can understand just how much pain i have and am still in. initially i consulted my doctor, who believes i was suffering from arthritis, which he felt had been exacerbated by the job change. i still do not believe it is arthritis, i have arthritis in my lower back and i do know the difference between the pain in my lower back, i am beside myself to draw a end to this dreadful pain i have been experiencing, i wondered if there was anyone out there who could please shed some light onto my dilemma. Tuesday the 7th march i am having a nerve block done by my neurologist, i am hoping this will work for me, if it doesn't i wondered if anyone else out there has had similar problems, i have been on the net to investigate my symptoms and occipital neuralgia is what i believe i have, unfortunately because nothing is showing up on mri's or xrays ( only degenerative arthritis) is showing up. i do know one thing i have gone into work for nearly 18mths now in severe pain and am beside myself for someone to help me. i am unable to go out socially for pain is too much to bear, i use a heat pack on my neck it doesn't stop the pain however it soothes it slightly. it has been my worst nightmare , i have had face pain for nearly 14yrs and this has been bad enough to deal with, but having this neck, head, throat, ear pain, shoulder pain is really getting the better of me. is there anyone out there medical professional or sufferer that can help me on my quest to find an end to my problem and anyone else out there who might be suffering similar scenarios. look forward to any response thanking you most kindly and awaiting any positive or any information at all

Denise.

Name: Cindy S.
City: McMinnville
State: Or
Country: United States
email: private
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, Microvascular Decompression
Comments: I am now 42 years old and a nurse
Date: 03/05/00

9 years ago, I felt my first excruciating facial pain from TN. It felt like I had put my tongue and face in the light socket, and I was getting electrocuted! My daily shocks increased in frequency (hundreds)and duration, from 45 seconds to mostly 2 minutes (the longest lasted 4hours!) Prior to my last Microvascular Decompression surgery, I had 2), the ONLY thing that seemed to helped at all, was Tegretol. At times, I took way too much and would have toxic blood levels. I hated the side effects, (fatigue to hallucinations) but felt I couldn't function without it! Even though I took Tegretol for about 3 years, any sensation or movement on the right side of my face could start an 'attack'. I learned to talk without touching my tongue to the roof of my mouth! Boy, did I sound funny! Brushing my teeth, kissing, talking, drinking, eating, heat or cold on my face, the wind, or even smiling, was a game of chance! I never knew when the pain was going to hit! To cope, I would try to avoid anything that might cause the pain! My first surgery, I had a Teflon sponge put between the nerve and artery. It was unsuccessful because the doctor did not go far enough down the nerve. My second surgery was done at OHSU by Dr. Kim Burchiel. He replaced the first sponge, and put in one more. Then cauterized blood vessels that crossed over the nerve, and chipped bone away from the back of my nose! This just amazes me, since they started by drilling through the back of my head! I have experienced some memory loss. I forget words, or parts of past memories. At times when I'm really tired, it seems like my tongue doesn't work right. This causes me to slur some words slightly. The surgeries were not pleasant, but when the medication stopped working I felt like I had no other choice. My last surgery was June 16,1995 and lately I have been experiencing a sporadic burning sensation on the right side of my nose. Is the TN starting again?!!!

Name: Brian
State: CA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments:
Date: 03/05/00

Story
I am not a sufferer but my father is so I am asking this on his behalf. I have heard about the use of Botox, the toxin produced by the botulisim bacteria, being used to deaden nerves in the face. Would it be useful in treating neuralgia? Anyone who knows anything and could reply it would be appreciated.

Name: Gary Cook
Email: ccook1@tampabay.rr.com
City: Seminole
State: Fl
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: First Tegretol, and than Vascular Decompression
Comments: I just hope the monster is gone!
Date: 03/03/00

Story
I elected to have Vascular Decompression surgery performed at the U. of Florida by Dr. Rhoton on 21 February, 2000. I'm home on sick leave with pain; however, the pain is from the surgery, and not TN. Feel free to e-mail me if you have any questions. You folks sure helped me!

Name: michelle
Email: michelle@juno.com
City: bradenton
State: fl
Country: usa
Diagnosis: Atypical TN, Atypical Facial Pain
Date: 02/29/00

Story
I am a single 33 year old mother who has had facial pain for about 6 years. I know it has some thing to do with trauma to my face caused by repeated blows to the right side of my face and head by domestic violence about 10 years ago. I have spent thousands on dentist procedures had all my top right teeth removed and no relief. when it started it was a couple times a month, now it is everyday non-stop unless I am on narcotics. I am desperate have had 8 dentist, 4 neurologists, 2 neurosurgeons and a pain mgmt doctor who seem frustrated with me, they make me feel like i am faking this for pain medication! I wished they could feel what i feel for just one day. My family thinks i can "get my mind off of it" "it cant be that bad all the time" I cant even read to my daughter. have been on all medications and had 2 radio frequency procedures which were so painful i have night mares about procedure I am scared of having to live the rest of my life with this pain which is getting worse every month if it wasn't for my daughter I would just as soon be dead and pain free

Name: Mary P.
Email:
City:
State:
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: 6 medicines and no relief just allergic to the tegretol
Comments: Day to day is the only way with TN
Date: 02/26/00

Story
I live everyday as though someone is pounding spikes up my teeth through my cheek bone in my right eye and someone is stabbing me with a knife in the right side of my head holding it there, then taking it out, letting me take a breathe and then jamming it back in. My teeth ache from the clenching of my teeth from the pain. I'm exhausted form the pain! I had to quit my job and do a strictly commission position because I can't be reliable. Imagine that! I just thank God for my faith and family because with out them I wouldn't be here. This pain is unbearable but I know, if I wasn't to see my children grow I have to deal with it, and by no means is it easy. Today I cried at a merchants place of business the pain was so bad. Tonight I thought I would look up some information on it and low and behold I'm not alone. I read the stories and just wept I can feel the pain of each and everyone of you. I was to go to Ca. for a funeral this weekend but told my mom the pain I just couldn't fly. Tonight I find the conference in Ca. going on. I wish I found this earlier because I would of gone. I truly could of used some help from others who are going through this.

Name: Denise
Email: dinky@onlinemac.com
City: N/A
State: Or.
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretol, Neurontin, Planning MVD
Comments: Watch your liver enzymes
Date: 02/25/00

Story
I am a 48 yr. old woman with Tn for aprox. 8yrs. I would usually come out of remission on a yearly basis with TN lasting about 3mo., until last Nov. when remission no longer came. Tegretol would usually do the trick but this time it not only didn't work it increased by GGT which is a liver enzyme. Stopped taking it, no big deal it didn't work anyway! I am a nurse and had to quit my job because I got so I couldn't even speak or sometimes blink without triggering those 30 second to 2 or 3 minute electrical jolts. My neurosurgeon has recommended MVD but we are waiting 1 mo. to see it Neurontin will help as I started taking it for my back 2 1/2 wks. ago. My pains are now those little jolts while chewing, brushing my teeth and sometimes talking and washing my face rubbing face cream in. I keep waiting for one of those long attacks but it has been about 2 wks. I also seem to have had dental work precipitate me coming out of remission. It would start with deep nerve pain all over with no rhyme or reason to its pattern and I could usually count on this kind of pain being a precursor to the TN, yet doctors don't ever seem to correlate the two. My MRI and MRA did not show a vessel loop and I am fearful of the numbness after cutting the nerve should that be necessary. I find it interesting that a writer in this forum mentioned tongue numbness when my doc said that would not happen. I hate the feeling of Novocain and can't imagine having to live my life with that kind of numbness since it's permanent. Oh well, that's some of my story. If anyone has details as far as mvd and surgical side effects or options to surgery such as how a gamma knife procedure is done please fell free to drop me a line. Thanks for the opportunity to unload, Denise

Name: Rachel
Email: Private
City:
State:
Country:
Diagnosis:  Trigeminal Neuralgia
Treatments: Tegretol
Comments: I'm not so sure I have been diagnosed correctly.
Date: 02/23/00

Story
I was diagnosed with TN yesterday and from what I'm reading I think they missed the mark. I have had a long bout of sinus infection and treated with 4 antibiotics. One side of my face is swollen and tender (sometimes painful). After a CAT scan revealed that my sinuses were clear, I was admitted to the hospital for cellulitis. I saw an ENT upon entry to the hospital and he immediately diagnosed me with TN and they put me on Tegretol and sent me home. I'm not having he shocking pains described by TN patients that last for only moments. My pain and swelling has been going on for three weeks. I'm at a loss as to what to do next.

Name: Pamela
Email: ims@webzone.net
City: N/A
State: OK
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Medications then Gamma Knife
Comments: In Pain but Hopeful.
Date: 02/18/00

Story
I have been diagnosed with trigeminal neuralgia. I tried Tegretol, and all the regular medications usually prescribed. Nothing helped. I couldn't tolerate the medications.

The pain is on the right side of my face along the upper and lower jawline. My skin even hurts to touch on that side. I am in my 30's, and had never heard of this condition before waking in the night with the worst pain. It felt as if I had been hooked up to an electrical outlet!

I researched and came across the "Gamma knife" procedure; it appears to be the least invasive. It has been highly effective in treatment outcome.

The Gamma Knife was a success; I had no pain. After six months, however, it did return. I understand in about 33% of those treated with the gamma knife the pain has come back.

I have prayed and researched again other options. However, the gamma knife still seems to be the one for me. I was fortunate enough also to be referred to a neurosurgeon whom is willing to take the time to listen.

Researching has been the best tool for me. Many physicians are not trained in the gamma knife. Perhaps this may be why when researching, I found few trained to do the procedure. I pray everyone with this terrible pain finds relief.

I am about to undergo the gamma knife again. I chose this over the MVD, because the risks are low with the gamma knife in contrast to any other procedure.

Please feel free to contact me if you would like any information on the gamma knife. Praying this will work, and confident it will.

Name: Linlen
Email: 
City:
State:
Country:
Diagnosis: Atypical Facial Pain
Other: atypical facial neuralgia
Treatments: root canals, gum surgeries, every medication imaginable, tooth removal, alcohol, steroid, inflammation and antibiotic injections, MRI, neck and spine x-rays, mouth splint, examinations & treatments by over 35 doctors.
Comments: I have a constant burning over and behind my two front teeth
Date: 02/17/00

Story
I have a constant burning in my gums over and behind my two front teeth. I have had this condition since 1993. I have not been able to determine what could have caused it. It came on sort of slowly. Treatments started with one root canal then another with no success. Soon these were followed with a mouth splint then an oral surgeon cut over and behind the two front teeth. I went to doctors that x-rayed and did tests on m y head and neck. Then the medication treatments started with very little or no relief. Another oral surgeon gave me alcohol blocks, steroid and antibiotic injections with no relief. I was examined by neurosurgeons, ENTs and several neurologists prescribed different medications. I also had one of my two front teeth removed and had to have a bridge. I was a participated in a study for atypical facial pain at NIH in Bethesda Maryland. I went to Cleveland Clinic for possible Gamma Knife surgery and was rejected because the doctor said the pain was in the front of my mouth not on the sides. The pain has been described as in the nasal palatine nerve area. I have taken acupuncture treatments with a little relief. I now am on 3200 mg of Neurontin a day, 200mg wellbutrin, 200mg Lamictal and 400mg Ultram. These all combined still do not take away all of the pain. Some days I am sort of pain free part of the day. I am depressed about my constant pain. It is very hard to keep going with daily life. I had to retire early two years ago because I could no longer handle the pain and pressure of my job. The prognosis now is that I will have the inflammation all the rest of my life. If there is anyone that has this pain in the front of their gums, please let me know. I have not been able to find a doctor who has ever heard of this same condition. Write to the facial pain.org and they will pass the information to me or write here. I hope to find a communication from someone.

Name: Michael H.
Email: meh517@yahoo.com
City: Raymond
State: WA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Having surgery in 8 days.   15 medications.
Comments:
Date: 02/17/00

Story
The pain started in Oct. 1997. I've had it off and on (approx. 3 times per year) since. I've had to put my life on hold. My family has been very supportive. If it wasn't for them I would either be in a mental institution or have committed suicide, by now. I've gone 8 days without food or drink causing severe dehydration. A lot of doctors laughed at the possibility of me having TN. "That's something that women over 50 get" . Well, sorry...I'm 25 and I am suffering. I hope that my surgery is successful, I just wish that TN wasn't something that I will have to deal with for the rest of my life...or until a cure is possibly found. We all just have to hang in there.

Name: Dick Snook
Email: Private
City: Whiting
State: NJ
Country: Ocean
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin, Baclofen, Tegretol
Comments: BE AWARE OF TEGRETOL SIDE EFFECTS
Date: 02/11/00

Story
I suffered with Trigeminal Neuralgia for 3 years. I was being treated with Neurontin and Baclofen for a little over a year without success. Tegretol was prescribed to replace the Neurontin. A reaction to Tegretol was experienced and was hospitalized for 4 days with Stevens_Johnson syndrome (loss of skin). The experience left me with cirrhosis. I under went Microvascular Decompression surgery on December 14, 1999 and was able to eat breakfast in the ICU the following Morning. I have been PAIN FREE since the day after surgery. I am feeling good and have gained 10 of the 55 pounds that I lost in the year prior to surgery.

Name: popette
Email: Private
City: summerside
State:
Country: canada
Diagnosis: Occipital Neuralgia
Treatments:
Comments:
Date: 02/10/00

Story
it is not me who has this, my sister was told this is what she has although no ct scan was done nor eeg not even a blood test!! steroid treatments haven't helped and she has pressure on one side of the head all the time with terrible headache constantly for three weeks now. we are at our wits end trying to help her when we can't seem to get any answers from her doctor who hasn't even referred her to a neurologist yet! should there not at least have been a ct scan done to rule out organic reasons for a chronic headache? she has been unable to work now for two weeks and is getting pretty disgusted.

Name: heather 
Email: heather_scully@canada.com
City:
State:
Country: Canada
Diagnosis: Trigeminal Neuralgia
Treatments: MVD in Dec.99 TN is back
Comments:
Date: 02/08/00

Story
I've written before. I finally went to Pittsburg in Dec.99 and had MVD surgery. I had a difficult recovery and spent 8 days in hospital in the States and three more when I got back to Canada. I woke up pain free but the pain came back within a month. My doctor wants to put me back on Tegretol which I had a reaction to before ( my skin got extremely itchy) I am willing to try it as the pain is becoming unbearable. I'm 38 and have been of work now for 4 months, the one thing that keeps me going is my 9 year old son, life can become difficult trying to deal with TN. My neurosurgeon also mention Gamma Knife procedure, has anyone had this? I am interested to hear as I've already had one failed surgery. Thanks for listening

Name: Mom
Diagnosis: Trigeminal Neuralgia
Treatments: medications
Comments: Any help our advice I can get.
Date: 02/03/00

Story
I am a 45 year old female, I have been diagnosed with trigeminal neuralgia I have had it for 2 yrs.I had all kinds of tests for M S, cancers, and all other tests you can think of they all came back negative ! My symptoms include burning on my tongue, numbness on my lip dull pain up the side of my face, pain when I put my teeth together, bad pain occasionally. My neurologist is mainly playing with meds, tegretol and now I am on Neurontin, they help but the symptoms are never gone all together. I read a letter from another patient that they taped a magnet to their face .I asked my Dr. about it and he said try it . I did not try it yet but if any one out there did let me know! My neuralgia is sometimes more of a nuisance than alot of pain!!!!!!!!!!!!!! If there is any one out there that would be able to help me our give me advice on how to cope with this I would be glad to hear from you. Thank you for listening to me!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

Name: Mike
Email: jfkscamelot@aol.com
City: Collinsville
State: il
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin/ Tegretol
Comments: meds not working
Date: 02/03/00

Story
Hi my name is Mike I am a 47 year old male. About 6 months ago while in the shower I started to wash my hair when all of a sudden on top of my head near the back I hit a spot of which I felt like I had been shocked. I went to my Docter and he asked if I had Hit my head. I told him no but he gave me some anti-inflammatory medication. About two months later while working when I touched my forehead or right eye I would get excruciating pain through my head. I went back to the doctor and he said that he thought I had TN. He prescribed Neurontin 1500 mg a day. The week of Christmas the real pain started to come and was it a killer. The whole week the pain would come to the left side of my face and last for several minutes. I went back to the Doctor and he set me up with a Neurosurgeon. He the to told me that I have TN. When he found out that the Neurontin didn't work he put me on Tegretol. For the present I am off work from minor surgery that I had and I am suppose to go back to work in two weeks. While taking the tegretol I dont know how I can work. I am a Police Officer and the medication makes me feel like I am in a daze. I am considering Microvascular Decompression surgery. I hope this works. The pain is unbelievable. When we with TN say PAIN I really think no one knows how strong it is. God Bless all of you. Mike Please feel free to e-mail.

Name: "hairhurts"
Email: bhollwedel@aol.com
City: levittown
State: NY
Country: US
Diagnosis: Trigeminal Neuralgia
Treatments: Doctor is considering anti-viral med., which he had good luck with on a recent patient
Comments: Experience of others desired before I begin treatment.
Date: 01/31/00

Story
After two years of "my hair hurting", I found a doctor who didn't diagnose me as a nutcase.

Name: Laura M
Email: lmorris@hess.com
City: Houston
State: TX
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments:
Date: 01/26/00

Story
I was diagnosed in March of 1999 with TN by my Dentist. I was in the process of having dental work done when this horrible pain started and seemed to move from tooth to tooth. At first I thought it was a tooth and then a sinus infection but of course I was wrong. I tried Tegretol but that made me too drugged. I do not take anything and since I was diagnosed, I usually have pain on a low level daily and bad pain probably every other day. The pain usually lasts around 20 minutes and then subsides. Now I am experiencing this severe pain anytime I eat warm food. I cannot put anything in my mouth that is too hot or too cold without going through the throbbing and aching face pain. I usually ride out the 20 minutes of pain. I know that I am lucky not to have the lightening bolt pain that I read about. I am afraid that it may eventually show up. My pain seems to come more frequently as time passes. I am really curious to know if anyone else experiences what I have. I associate my pain to the pain of an abscessed tooth. I have had to have a couple of root canals in my life and this is how my tooth felt. Please feel free to contact me with any information.

Name: Jan
Email: dwarr@onlinemac.com
City: McMinnville           
State: OR
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Microvascular decompression
Comments: No pain
Date: 01/24/00

Story
My story is very like most of the ones I've read on the internet. Mine is different in that I am an old nurse and my late husband was a dentist. When my disease started in 1989, I was sure in a few months that I had TN. I remembered the treatment options from school and decided to learn to live with that nerve as comfortably as possible for as long as possible. It was 9 years before the TN progressed to where it was firing without provocation and unpredictably. The pain attacks were getting longer and more often.

I first saw and Ear, Nose and Throat specialist. He ordered tegretol. That caused me to sleep 18 hours a day and within a month I was hospitalized with a serious blood electrolyte imbalance. The physician referred me to Dr. Kim Burchiel, whom I have since learned is on the TN Assoc. board of directors, and a microvascular decompression was scheduled for a month later. My recovery was uneventful and I am now pain free for 2 years and 4 months.

I have a moderate amount of numbness in my face and right upper arch and tongue. Annoying but not unbearable. I also find that when I get very tired there is some aching in the temple area of my head. The tenderness of the operative area does not seem to be improving much and at this point it probably won't

I count my treatment as very successful. I would not have lived with my disease at it was. Neurontin stopped the pain while I was waiting for surgery and it caused no serious chemical side effects in the month I took it. I just couldn't live with the lethargy that it caused. I'm sure I would have killed myself if I hadn't found help and now I live a very normal life including driving and about anythings else people my age do.

My heart goes out to those of you who suffered for years without knowing what was wrong. The TN Association is a wonderful way for all of us to share our stories so fewer will have to suffer useless treatment for so long. YOU ARE NOT ALONE.

Name: Beth
Email: rodeo1bd@aol.com
City: pebble beach
State: ca
Country: usa
Diagnosis:  Trigeminal Neuralgia
Treatments: Tegretol and Atavan(sp)
Comments:
Date: 01/23/00

Story
My Mother is 71 years old and she had her first attack a year and a half ago. Then she had nothing till this last Christmas. She has then had an attack every day this last week. I finally was able to get her to see her GP. They increased her medication and gave her a sedative to relax her. Now she is afraid to go out of the house or do any activities at all because she feels an attack may occur. I have been with her when she has had an attack and I have felt so useless I could cry. What can I do to help her? The attacks are all different lengths of time. Lots of time I talk to her to keep her mind from thinking of her pain. She gets so exhausted. Any ideas! We are hoping to attend a support group in March together. Thank you

Name: barry m.
Email: barrymartin@home.com
City: richmond
State: bc
Country: canada
Diagnosis: Trigeminal Neuralgia,  Atypical Facial Pain
Treatments:
Comments:
Date: 01/22/00

Name: KILIKI
Email: private
City: Lakehead
State: CA
Country: USA
Diagnosis:Atypical Facial Pain
Treatments: BACLOFEN,TEGRETOL,DILANTIN,NEURONTIN
Comments: NEURNONIN 400MG 6-7 X A DAY SEEMS TO HELP WITH THE SUDDEN AND SEVERE TEMPORAL SPASMS BUT I AM CONCERNED WITH TAKING SUCH A LARGE DAILY DOSE. MY RECENT EMPLOYMENT WILL NOT ALLOW FOR ANY BREAK THROUGH ATTACKS. I AM A PHLEBOTOMIST AND THERE IS NO WAY POSSIBLE THAT I CAN DO MY JOB WITH A ATTACK.
Date: 01/21/00

Story
I HAVE HAD THIS TN FOR THE LAST 5-6 YRS. ALTHO WHEN THEY FIRST BEGAN I THOT THE SUDDEN SHOCKS OR LIGHTENING BOLT ATTACKS WERE FROM LEFT OVER TMJ WHICH I HAD GONE THRU APPROX. 5 YRS. EARLIER AND I THOT I SHOULD WEAR THE OLD SPLINT I HAD WORN AND SO I HAD A NEW ONE MADE AND I TOOK NO TIME TO DISCOVER THIS WAS NOT TO CASE AND THEN MY GP DIAGNOSED IT AS TRIGEMINAL NEURALGIA AND STARTED ME ON TEGRETOL I HAVE USED TEGRETOL, BACLOFEN, DILANTIN, AND SEVERAL OTHERS. 3YR. AGO I STARTED ON NEURONTIN 300MG 1 BID. AND AM NOW TAKING 400MG 6-7 X A DAY. AFTER READING MANY OF THE STORIES I HAVE NOT FOUND ANYONE TAKING SUCH A LARGE DOSE AND AM CURRENTLY TRYING TO GET IN TO SEE ANOTHER NEUROLOGIST AS THE ONE I HAD SEEN HAS GONE BACK TO INDIA. DOES ANYONE ELSE TAKE SUCH A LARGE DAILY DOSE??? I AM CONCERNED WITH LONG TERM AFFECTS OF TAKING THIS DRUG. BUT I GUESS IT HASN'T BEEN AROUND LONG ENOUGH TO KNOW.. I AM FEMALE, 44YRS YOUNG. HOWEVER WHEN I GET THESE LIGHTENING BOLT ZAPS TO MY RIGHT TEMPLE I START FEELING OLD AND WORN OUT. THEY LEAVE ME WITH A BRUISED HEAD AND FEAR OF CHEWING. ALTHO CHEWING IS NOT ALWAYS A TRIGGER FOR THESE ATTACKS AND MY DEAR HUSBAND HAS PUREED MY FOOD AT TIMES FOR ME. WOULD LIKE TO HEAR IF ANYONE HAS HAD OR IS CONSIDERING THE PROCEEDURE WITH THE LITTLE CUSHION PUT IN BEHIND THE MASTOID. AND WHERE IT WAS DONE AND HOW LONG IT HAS BEEN WORKING AS FAR AS RELIEF WITHOUT ANY DRUGS OR FEWER DRUGS. THANK YOU, KILIKI IN CALIFORNIA

Name: BAILEY
City: PATCHOGUE
State: NY 
Country: US 
Diagnosis: Trigeminal Neuralgia
Treatments: 
Comments: 
Date: 01/16/00

Story 
I AM A 32 YEAR OLD FEMALE. AFTER THE BIRTH OF MY SECOND CHILD IN 1995 I DEVELOPED TERRIBLE JOINT PAIN, HAD DIFFICULTY SPEAKING AND REMEMBERING THINGS. AFTER GOING TO MY PHYSICIAN WHO REFERRED ME TO A NEUROLOGIST. I WAS SENT FOR SEVERAL TESTS ALL TEST CAME BACK FINE. I THAN WENT TO A REUMATOLOGIST WHO DIAGNOSED ME WITH FIBROMYALGIA AFTER SEVERAL DIFFERENT MEDICATIONS I FINALLY FOUND 2 TYPES OF MEDICATIONS THAT SEEM TO HELP MOST OF THE TIME. I ALSO DEVELOPED SEVERE FACIAL PAIN. AFTER MANY TRIPS TO TO DOCTORS OFFICE AND BEING TREATED FOR A SINUS INFECTION WHICH I KNOW I DID NOT HAVE I HAD A CAT SCAN DONE WHICH CAME BACK FINE. I WAS THAN REFERRED TO A NEUROLOGIST AGAIN WHO SENT ME FOR A MRI. THIS TIME IN THE MATTER OF 2YEARS PRIOR TO THE LAST MRI THAT WAS DONE A SPOT SHOWED ON THE BRAIN WHICH COULD MEAN POSSIBLE EARLY STAGES OF MS. I HAD A SPINAL TAP DONE WHICH WAS NEGATIVE FOR MS. I WAS GIVEN TEGRETOL WHICH MADE ME FEEL TO DOPED UP ALL THE TIME. I TRIED SEVERAL OTHER MEDICATIONS TO NO AVAIL. RIGHT KNOW I AM TAKING NORTRIPTYLINE WITH VERY LITTLE RELIEF. I HAVE NEVER FELT SUCH TERRIBLE PAIN BEFORE AND I DON'T SEE ANY PERMANENT RELIEF IN THE NEAR FUTURE. I DON'T SEE HOW IN ALMOST THREE YEARS I HAVE BEEN DIAGNOSED W/FIBROMYALGIA FACIAL PAIN, A SOPT ON THE BRAIN AND A SLIGHT CASE OF ASTHMA AND THEY ARE NOT ALL RELATED. ANY ONE WITH ANY OTHER TREATMENTS THAT HAS WORKED FOR THEM I WOULD LIKE T HEAR FROM YOU. THANKS 

Name: qcq 
City: changchun 
State: jilin 
Country: china 
Diagnosis: Glossopharyngeal Neuralgia 
Treatments: I do not know. 
Comments: 
Date: 01/15/00

Story 
My mother is suffering from Glossopharyngeal neuralgia. The rhizotomy was done for 2 times. But the pain is still felt acutely. Please tell me how to do. 

Name: mARY 
Email: foxykid@fastlink.com.au 
City: LakeMAQUARIE 
State: nsw 
Country: australia 
Diagnosis: Trigeminal Neuralgia 
Treatments: TEGRETOL & BACLOFEN 
Comments: 
Date: 01/15/00

Story 
i HAVE HAD TN FOR 3 YRS SICK OF FEELING TIRED AS A RESULT OF TABLETS& NOT BEING ABLE TO RELAY TO PEOPLE WHY I'M FEELING TIRED & JUST HOW I'T'S NOT JUST ANOTHER PAIN I NEED TO TALK TO PEOPLE WHO UNDERSTAND 

Name: MWilson 
Email: MWilson839@aol.com 
City: Piedmont 
State: SC 
Country: USA 
Diagnosis: Trigeminal Neuralgia , Anesthesia Dolorosa, Occipital Neuralgia, Fibromyalgia 
Treatments: Nerve Blocks,Numerous Meds, and MVD in 1998 
Comments: There is relief somewhere 
Date: 01/14/00

Story 
My pain began about 6 years after a car accident in which I was hit head on and most of the trauma was to the left side of my face and head. The pain began and at first felt like someone dropped a volcano deep within my left ear, The burning and the searing were the worst! I went to neurologist after neurologist and doctor after doctor (any and every kind of every specialty) There was no one who could tell me what was wrong with me. I have had migraines for 20 years and I knew without a shadow of a doubt that this wasn't an ordinary migraine! I was dismissed by the doctors, treated as though I was just a hysterical woman, treated as a junkie out for his/her next fix, and just down right degraded. I left each office feeling worse than I had when I initially set foot in their doors. In Aug of 96 I got pregnant and what should have been a happy and go lucky time turned into a time of HELL! I was treated every other day in the hospital outpatient dept. and given IV's of Demerol and morphine, of course I had to sign a release stating that I knew the consequences of what this could do to my unborn child! I however had no choice I was in so much pain and so desperate for relief. I fought and I tried to maintain control so I didn't have to take the meds but with this stuff there is no control! After my pregnancy, things calmed down a great deal and I was lucky enough to be able to enjoy the birth of my happy, gorgeous, and MOST OF ALL HEALTHY baby girl! In Dec 1997 things hit rock bottom again and I was back in the vicious cycle of going from one doctor to the next and still didn't have a DX... Finally in Jan of 1998 someone first spoke the words TN to me and I finally felt some relief at least I knew what I had... I felt relief that is until I started researching and trying to find some hope and basically there was none! I tried all the meds and all all the conventional methods of controlling the pain and nothing worked! In Oct of 1998 I had a Microvascular Decompression and was pain free for 2 months, however in Dec the pain came back with a vengeance... I have been fighting this mess again for another year and still have not found relief but I will keep fighting and with the help of my family and friends I will beat this thing...please remember to those of you who have this horrid disease...YOU HAVE IT, IT DOESN'T HAVE YOU! Best wishes and best of luck to all of you..Feel free to email at anytime... 

Name: Leslie Lindbloom 
Email: lindbloom@mail.com 
City: Eastpointe 
State: MI 
Country: USA 
Diagnosis: Atypical TN 
Treatments: Neurontin 
Comments: 
Date: 01/14/00

Story 
This is all very new to me. About one and a half weeks ago I awoke to find that the right side of my lower face and chin was numb. It was as if I had gotten an injection of novacane. Six doctor visits later I'm being treated for atypical tic doulooureux. The neurontin has relieved the feelings of buzzing and tingling but the numbness is still present. In all my serches I've not found anything which talks about patients with numbness but no real pain. Has anyone out there experenced or heard of such a thing? Any information would be greatly appreciated. Thank You.

Name: Barb
Email: newearth@goodnews.net
City: Cincinnati
State: OH
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Neurontin, then Microvascular Decompression
Comments: MVD - was a Success!!
Date: 01/08/00

Story
I had TN pain for 15 years, but it wasn't diagnosed correctly until 12/97. I had Microvascular Decompression surgery in June/99 and it was a success. Prior to the surgery, I took Neurontin. It helped some, but it made me sleepy and disoriented. Please feel free to e-mail me if you would like more information or would just like to talk. This is a horrible thing to go through.

Name: Pat
Email: kita@ptd.net
City:
State:
Country:
Diagnosis:Trigeminal Neuralgia, Geniculate Neuralgia
Treatments: Tegretol, Neurontin
Date: 01/05/00

Story
First of all I would like to know if anyone out there has been diagnosed with Geniculate Neuralgia (deep ear pain). If you have been can you please e-mail me and tell what and if any treatment has helped you........I would greatly appreciate it!! I suffered with severe inner ear pain for about 1 year or so before I went to see what the problem was and I went to E.N.T.'s, dentists, oral surgeons, and finally to a neurologist before I was diagnosed with Trigeminal/Geniculate Neuralgia. I now am suffering with this pain for 4 years. My doctors put me on Tegretol which helped for awhile then couldn't keep my pain away anymore so they put me on Neurontin. I still get pain on this medication too! The pain becomes so debilitating that I can't do anything but lay down. If anyone has any suggestions please let me know. The only thing I've found so far that relieves my pain some is laying down and putting pressure behind my ear/neck area. The pain comes whenever it wants and lasts any where from 2 to 8 hours. Thanks for listening and for any help!!!!....Pat

Name: Frank V.
Email: tanangis@aol.com
City: West Haven
State: Ct
Country: USA
Diagnosis:  Atypical Facial Pain
Treatments: Extensive drug therapy
Comments: The process of getting the care we need is almost worst than the condition itself!!
Date: 01/03/00

Story
Needless to say, it took years for me to attain relief from this frustrating malady. My first atypical facial pain occurred right after I got a routine dental procedure-insertion of a three unit permanent bridge. Pain started around the teeth and into the gumline even though the bridge was structural correct, radiologically fine, and the occlusion was appropriate. However, pain continued and seemed to get deeper into the cranial region. Dentists suspected a tooth was involved even though I already had root canal therapy. The tooth was extracted and deeper pain occurred in a different fashion. Instead of annoying cutting pain, there existed a more piercing, burning pain in or around what I finally learned the trigeminal nerve. Dentist after dentist, doctor after doctor, from dentist to doctor and doctor back referrals to dentist, it was a damn whirlwind of an experience. I finally reached my FOURTH neurologist who tried Tegretol which didn't work so we knew it did not fall in the classic form of trigeminal neuralgia. He diagnosed Atypical facial pain. Oddly enough they were the three most sweetest words I had heard in a long time because I finally had at least an answer after three and a half years of suffering terribly. The neurologist then put me on a tricyclic drug amitriptyline which worked very satisfactorily. I continued taking it for years and decided to wean off of it on my own and luckily enough, it never returned. However, two months after, I had another dental procedure done. I needed a root canal on the other side of my upper jaw. I opted to have a crown taken off instead of doing the procedure through the crown. The dentist banged off the crown successfully without breaking it and the root canal. As a result, the root canal pain went away, but I developed a second, different atypical facial pain. This pain was in the exact same region, but on the other side of my face. And this pain took on a much different form. It would occur only when I ate. It was spasmodic, cramping, and as I've described more accurately, a bone-chilling pain which would last a few seconds, but certainly enough to get my attention, and then go completely away, only to return in the same meal or the next meal. It did not matter what I ate, or how long I ate. It would invariably occur at least once during a meal. The neurologist who took care of my first pain was not successful in taking care of my new pain. He tried different medications which worked for a month, but faltered. He referred me to the Yale Pain Management Center. With a combination of four drugs working exactly at their doses in relation to one another, we relieved the pain. But it took a lot of trial and error. But as my story continues, there is always a glitch. I happened to forget to take my medicines in the morning one day, and I was fine that day (no bone-chilling pain), but the next day, (and this still astounds me), I developed the same symptom that I had on my right side (piercing, burning feeling) and now on my left side. So when I went to my pain specialist, who documented the experience I once had on my right side and was successfully treated with amitriptyline, we decided to resume amitriptyline at a low dose and it worked!! So I am taking four drugs for the spasmodic pain (baclofen, naprosyn, Neurontin, and Lamictal) for my left side, and taking Amitriptyline for also my left side. My right side pain has still not returned, but of course that original pain(burning and piercing) was chronic and did not result in chewing. I don't much chew on that side anyway because when I had the bridge taken out, as well as an adjacent tooth. there is no occlusion to speak of. Well, anyway, I was again in relief, but as my story continues, here comes another glitch. I recently needed gum surgery in the upper left side, explained about my atypical facial neuralgias, and went ahead with this surgery which was not much invasive. I did not anticipate a problem even though I vowed to myself I would be very careful of any oral procedures not to trigger my trigeminal neuralgias. Right after the gum surgery, my piercing, burning pain came back. The low dose 25 mg of Amitriptyline did not sustain enough relief, so I am presently increasing it gradually. I went up to 50 mg which helped, and then 75 mg which made it somewhat better. I know when I was taking single drug for my right side, I needed 150 mg to relieve it completely, so I am well within the maximum range of 300 mg. AMAZING, ISN'T IT! The saga will, I guess, continue for now, and that is why I would feel very empathetic to people with this persistent condition. I am willing to discuss the issue with anyone out there. Please contact me. I really feel that people can reduce their suffering if only doctors and dentists would invest more time and get educated about facial neuralgias as part of their protocol of practice.

Name:  dorothy
Email: cpotnar@concentric.net
City:
State:
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: baclofen, oral surgeries, sinus surgery, tegretol, lorazepam
Comments: only the last two really helped
Date: 01/02/00

Story
I've head tm for as long as I can remember. It was only diagnosed after I had a cervical spine injury and a doc put me on tegretol for the pain. After being told I had dental conditions, sinus problems (which in fact i did) and various other things, the tegretol did wonders for the pain. It makes me feel weird, tho, and I try to minimize the dose.

I do have sinus disease and it's interesting to me that after my two sinus surgeries i had less pain for a while. I'm told that the trigeminal nerve terminates in one of the sinuses -- one in which i have the most inflammation. I do seem to notice that if i get a bit of sinusitis the pain is worse and I need more meds.

I have to say that despite all the wonderful med professionals we have, it's disappointing when i look back on the decades during which i suffered. I couldn't do many things, like drive, for instance. If I'd experienced the pain on the road, there would be no question that i'd have caused an accident. I asked every doctor I ever went to about this "wierd pain in my face" and no one ever had a clue until the doc in the box lady put me on tegretol for something completely unrelated.

Right now i'm on a "sliding scale" dose of tegretol -- i get kind of spacy from it so i like to minimize it, and a small dose of lorazepam. That's the most effective regimen. I was previously on baclofen. I had refused tegretol for awhile because of the risk of agranulocytosis. The baclofen helped a bit but made me so tired it wasn't practical.

Here's something interesting, and I wonder if others have had similar experiences. I work in a hospital and have occasion to consult specialists about my patients. I went to a neurologist to ask about a patient who had seizures. She said that she had fewer seizures when she drank alcohol. I was concerned about the possibility of abuse or addiction for her, and I wanted to know if there could be anything to her story that her seizures were reduced by alcohol. To my surprise, he said that, while it was hardly a recommended treatment, alcohol did often reduce seizures.

The other day I got slammed with pain from my tn during a weather change. I had taken the tegretol earlier but it hadn't kicked in yet. I remembered my patient, and thought, "Maybe if her neurological condition can be helped with alcohol, so can mine -- temporarily." I got a beer and drank it right down so fast I almost got nauseated. But the pain subsided right away, albeit temporarily -- about 20 minutes -- and when it did come back it was at least tolerable. The tegretol kicked in shortly after that, and I was glad.

Name: Mary P.
Email: mpow60@aol.com
City: Kingsport
State: TN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol, neurontin, glycol injection
Comments: Thank God for this web site.
Date: 01/01/00

Story
I woke up one morning in September with one side of my face paralyzed and extreme pain. My physician immediately started me on an anti-viral medication. I was diagnosed with Bell's Palsy initially, but as the pain lingered and became increasingly severe, I was referred to a neurologist. He prescribed Tegretol, which I could not tolerate. I felt as though I was walking sideways on walls -- very disorienting. Then, they tried Neurontin. I did not experience many of the side effects I did with Tegretol, but I felt completely drugged and without any energy. And worse yet, the pain still existed. I'm 39 years old and had been very active up until this. Then the depression came along with the excruciating pain. My neurologist referred me to a neurosurgeon, who in turn, suggested I undergo a less invasive procedure of injecting glycol into the nerve. I did that in November, however, no relief resulted. Now I'm back on the Neurontin but I cannot function. I'm on disability from work, and I find myself ebbing away. No one knows anything about this, and to try and explain it is so frustrating. I feel isolated. My children (I'm a widow) just want a Mom who is happy and healthy. My neurosurgeon has suggested a procedure where he will decompress the nerve; however, this terrifies me. I am afraid of all of the possible side effects from brain surgery. Yet, I am more afraid of having to live like this the rest of my life. I would love to hear from other TN sufferers just to know I am NOT ALONE.