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TRUE STORIES Please note that treatments vary greatly depending on the individual. Do not base your treatment decisions solely on the personal stories you read here. Please keep in mind that the following comments do not represent a scientifically adequate cross-section of patients . Information here may be skewed and faulty, but on the other hand it is the closest thing at the moment to "the voice of the people"....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. 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 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: Please don’t give up. Love, Laura Myers Name: Alexis 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" 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 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 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. 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" 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. 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" 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. 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 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 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" 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 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 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 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 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 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 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 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. 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 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 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 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 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 Hi Fellow pain sufferers, 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. Name: Shannon 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 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 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 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 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. 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" 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 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 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. 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 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. Name: Eilene Treatments: Meds for 1 year, surgery Comments: TN is coming back after 4 years Date: 10/08/00 Story Name: "bear" Story Geoff (October 5th 2000) Name: pamela Story Name: "Bubbman" 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 These are good starting points. Good luck! Name: Kathy Story 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 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 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 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 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 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 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 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 do | |||||||||||||||||||||||||||||||||||
