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: Candace
Email: ccsmith@ccms.net
City: Austin
State: TX
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Currently none; previously on Tegretol, Dilantin, Neurontin, Baclofen and Ultram
Comments: Recently had MVD
Date: 12/29/99

Story
Four months ago I underwent an MVD for TN. At the time of surgery I was at the end of my rope. I was on so much medication to control TN (actually I use the term "control" loosely) that I had trouble standing up straight. I was frequently dizzy or drugged. I have a wonderful husband and two young children. I felt like TN managed every aspect of our lives. I work full time but most of my day was spent in a haze. Both my neurosurgeon and neurologist have been wonderful. My doctor's could make no promises that MVD would work but I was young enough that my chances were good that there would be a successful outcome. I spent 15-18 hours a day in pain before surgery. Before surgery I could not kiss my husband or my children! It has been four months and that simple joy along with routine things like washing my face or brushing my teeth without pain is incredible. MVD may not work for everyone and it certainly is not for everyone however I can tell you that the joy you feel of being free of the pain is unmeasured. I thank God for the TN Association and the contributors to this web site. It was here that I began my own education in TN when most doctors did'nt know what I had. Some had never even heard of it! Everyone who goes through the horror of this disorder and feels isolated when there is no one out there who understands what your going through can take comfort in finding someone here who does understand.

Name: JEANETTE G.
Email: CGONZALEZ@AMSOUTH.COM
City: PALM HARBOR
State: FL
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: DILANTIN
Comments:
Date: 12/28/99

Story
IT STARTED SEVERAL YEARS AGO (I AM 51 NOW) WITH TOOTH PAIN AFTER HAVING GUM SURGERY. THE DENTIST KEEP TELLING ME I WAS GRINDING MY TEETH. HE WOULD FILE THE AREA DOWN (LOWER RIGHT JAW). THE PAIN WOULD GO AWAY. THE NEXT YEAR THE PAIN IS BACK BUT A LITTLE STRONGER. DENTIST CONTINUES TO SAY I GRIND MY TEETH, SAME PROCEDURE DONE. PAIN GONE. PAIN COMES BACK THE NEXT YEAR EVEN STRONGER THIS TIME. DENTIST SENDS ME TO SEE A SPECIALIST (ROOT CANAL). TOOK X-RAYS. HE SAID HE COULDN'T SEE ANYTHING WRONG WITH MY TEETH. TOLD ME TO COME BACK IN A COUPLE OF WEEKS. PAIN WAS SO BAD I WAS AFRAID TO EAT OR SPEAK. WENT TO MY DENTIST AND DEMANDED TO HAVE THIS TOOTH PULLED OUT (WOULD NOT TAKE NOT FOR AN ANSWER). HE SENT ME TO AN ORAL SURGEON, WHO REMOVED THE TOOTH UNDER PROTEST. AFTER ASKING SEVERAL QUESTIONS ABOUT MY PAIN AND HOW IT STARTED HE FINALLY SAID "I BELIEVE YOU HAVE TN".

THIS DR. PRESCRIBED DILANTIN 200 MG A DAY. AFTER A WEEK OF THIS MEDICATION, THE PAIN STOPPED. YES I DID HAVE SOME SIDE EFFECTS. AFTER THE PAIN COMPLETED STOPPED THE DR. WINNED OUT OF THE MEDICINE. I NO LONGER USE THE MEDICATION, BUT HAVE HANDY IN CASE I NEED IT.

I HAVE SINCE THEN OCCASIONALLY EXPERIENCED MINOR ELECTRICAL OR STABBING PAINS AND SOME SENSATIONS ON THAT SIDE BUT NOT AS BAD AS THE FULL BLOWN PAIN.

I KNOW IT MIGHT RETURN SOON OR MAYBE NOT, BUT I FEEL CONFIDENT AT THIS TIME THIS MEDICATION WILL HELP ME. I AM NOT LOOKING FORWARD TO THE RETURN OF THE PAIN SINCE READING ALL THE LETTERS FROM OTHERS WITH THIS DISEASE. THANKS FOR LISTENING.

JEANETTE

Name: JME
Email: jujoy@earthlink.net
City: Minneapolis
State: MN
Country: USA
Diagnosis: Unknown
Treatments: None at this time
Comments:
Date: 12/21/99

Story
After reading stories like these and doing my own research on the internet, I believe what I have is Atypical Trigeminal Neuralgia. I'd really love to find others with similar symptoms and see if you have found any help.

It started about 7 years ago with intermittent tingling sensations in my gums, top right side only and surrounding one tooth in particular. Dentists patted me on the back and sent me on my way saying there was nothing wrong.

Over the course of the years the pain has gotten more severe and more frequent. Now it is constant pain that seems to start, or at least manifest itself, in that same area of my gums between my right upper molars. Some days it is minor pain and some days is severe. It radiates up my face and, sometimes, almost makes my eye water. Sometimes it is not sharp pain but more of an aching pain. I saw several dentists and finally was referred to facial pain "specialists" who have not been able to do anything for me in the two years I have been going to their clinic. They have not even mentioned anything like TN, ATN or anything like it. I found this on my own!!! (It's the only thing I've seen or heard that even comes close to what I have been experiencing.) The doctor's just keep making me come back they just keep telling me things like "this is a difficult case" and they "just can't seem to figure out what would be causing this pain." I'm not even sure they believe that I have pain. I am so frustrated by it all!

I'd love to know of others with similar symptoms and possible treatment ideas.

Name: Annamarie P.
City: Dublin 15
Country: Ireland
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin 400mg 3 times daily Zydol 100mg 3 times daily
Comments:
Date: 12/21/99

Story
I found out that I'm suffering from TN only a couple of months ago. In fact it started last November. My Doctor sent me to the Dentist to see if it were my teeth but they were fine. the pain is sooo bad at times I just want it cut the pain away. I was on Tegretol 300mg but they change my tablets last month, as they did not seem to help me at all and to tell you the truth I don't think the Neurontin is either.

Name: ann
Email: parrothead@redrose.net
City: lancaster
State: pa
Country: US
Diagnosis:  neuralgia
Treatments: i am curently on vioxx and dilantin and take amitriptyline to sleep at night
Comments:
Date: 12/20/99

Story
My name is ann and i am 36 years old. My story starts 2 and a half years ago. I went to the dentist and was sent for a root canal on my front left tooth. In the meantime i had ear pain and went to the family doctor and was sent to an ENT who told me I had tmj. I went and had the root canal and ever since the root canal my tooth and gum hurt. The tooth and gum do not hurt all the time just sometimes. One day might be the tooth and one day the gum. When i get that pain i also get pain in my cheeks and pressure in my nose. I was being treated for a sinus infection but it did not help so i had sinus xrays taken and they showed no infection. Then i started having headaches and blurred vision and pain around my eyes. I went to the eye doctor and they did test and found nothing. They sent me to a neurologist to have a lumbar spinal done and found nothing. Then they did a brain scan and found nothing. in the meantime i was being treated for the tmj. had a mouth guard made but could not wear it cause of the tooth. I went back to my dentist complaining once again of gum and tooth pain but told him i can't tell if the pain is coming from the root canal or the tooth beside it but that my gum hurt into my lip. He sent me to a root canal doctor to look at it and the doctor said nothing is wrong. and told me there was nothing he could do. Went home and the pain got so bad that i would sit and rock back and forth and pull my hair out. So my hubby called the root canal doctor back and he told me to come back in and he did root canal on the tooth next to the one that already had the root canal and he numbed the gum but i felt so much pain anyway when he did it. After about 4 days of constant pain it was time to go back to see him and i told him i worse pain so he opened my gum up to see it there was an infection and there was nothing there. He again said sorry nothing i can do if your still in pain go to your family doctor. Well we called the tmj doctor instead and told him and he sent me to someone in the next county and they did not find anyone so they sent me to a oral surgeon who open my gum and looked and said there is nothing wrong and told me to go to the pain clinic. Then i started getting dizzy and having pain in my arms and legs. I went back again to the tmj doctor and asked if this was tmj relatied and he said no and gave me med for the tooth and said i had neuralgia. but not what kind. So as of right now i am on med for the tooth but my pain seems to shoot all over my mouth. sometimes it feels like all my teeth hurt. the right side of my face has really been hurting the last couple of days and the dizziness has gotten worse. the pain is always a throbbing one. and i get pressure headaches. No one has a real clue what is wrong with me and all i do is cry and get angry . I have no quality of life . I have 2 kids that need me a 3 yr old and a 6 month old. I will be sometimes pain free for 6 months. When the weather gets bad it is the worst. I just at this point wish a doctor really knew what was wrong with me. I do know i have tmj but was told the tooth pain is not related to that. but other than that the doctors have no clue. Doctors have treated me like dirt about this. They come to think this is all because of stress and not real pain. the stress if any i feel is from them. I am at my last rope with no hope. I am giving this med a try have been on it for a week was told it takes up to 3 weeks to help. as anyone had symptoms like mine? IF so i would love to hear from you.

Name: Tamra
Email: quik333@aol.com
City:
State: IL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: carbamazepine, 2 operations, Elavil, pressure points
Comments:
Date: 12/20/99

Story
I'm 37. I've been living with this horrible pain for 22 years although after these last two weeks, I can't imagine how. I remember my first pains when I was 15...not long after I had mono/hepatitis. Because I didn't want to bother my family, I kept my pain to myself as much as possible but complained only about my "ear pain" when it completely incapacitated me and I couldn't move without the stabbing. It came suddenly and went just as suddenly. Sometimes it lasted 10 minutes, sometimes 36 hours. It didn't seem to have any pattern (I tried for years to catalog it), seemed aggravated by any number of things ie., smiling, laying my head down, a cool draft, wind, putting my hair up, wearing my glasses and other "paranoias". I used to get a bad taste in my mouth. The pain comes suddenly, any time day or night and leaves just as instantaneously. My demon is stabbing sharp pains in the sides of my head and ears and sharp electrical shocks up the back of my skull. Usually only one side of my head at a time, mostly right but sometimes left side and once in a great while...both sides. Although lately, I've experienced the stabbing with skull and facial pressure so crushing that it feels my eyes will pop out and my head will explode. There are dagger stabs behind both of my eyes and massive aching in my jaw and ear. The sharpness of the stabbing in my skull is such that I feel I can't move. I'm scared to move lest it stabs me even worse. I can hardly talk...just try to speak without moving my lips. The pain is blinding...my brain aches and hurts terribly even now...but only on the right side this time. Sometimes it's the left but mostly on the right. When I was 23 or so I started going to the doctor's on my own. The first MD sent me to an oral surgeon who suggested maybe TMJ and decided extraction of my 4 wisdom teeth, 4 molars and an extra side tooth would rid me of these episodes. I had this procedure done in a hospital in surgery on New Year's Eve 1984 because I didn't want to start a new year with "the pain". 6 weeks later I got the pains again. I knew I hadn't been diagnosed right because the pain was the same. The next 4-6 years I spent diligently going from one specialist to the next, mostly neurosurgeons who put me on Elavil, told me to chew gum, not to ride the elevators and to go into a dark room to relax because it's probably stress. Nothing showed on MRI's, nothing on CAT scans, nothing in blood workups yet I continued to have these debilitating head and face pain episodes. Finally in 1989, I saw a neurosurgeon who thought I had a blocked salivary gland on the right side. I told him sometimes the pain is on the left but he said it was probably radiating. He suggested surgery to unblock the gland, which I gladly accepted. I went home feeling on top of the world because I thought I was finally going to be released from this pain after 12 years. However when he opened my neck for surgery he found at least 10 years of hemorrhaging, a completely destroyed right salivary gland, destroyed smaller glands and an infection ravaging its way through my neck. The operation was long...maybe 6 hours or so. He cleaned up the "messiest neck I've seen in my career". He completely removed what was left of my right salivary gland, removed misc. small glands, sent the infection sample to pathology and closed me up. Pathology couldn't identify the infection but he called the operation a success, except for the small nerve in my chin that they snapped. "That will only cause a small droop in your right bottom lip and some deadening along the jaw line." Oh well, at least the pain was gone. Until 8 weeks later when we were on vacation and it hit me in the middle of King's Island. So bad was the stabbing in my head that I couldn't function, couldn't move, couldn't talk, couldn't keep the tears away..another vacation ruined. Went back to the guy who did my surgery and reported the same pains, no better, no less. He said he fixed the problem, I couldn't have pains. They must be phantom pains. He absolutely would not entertain the possibility that he had not cured me or even diagnosed my problem correctly. He would not address the fact that they hadn't identified the infection. He would only say I was having phantom pain and he had removed most of my neck (can you imagine?) and there wasn't anything left in there that could hurt. I left there with so much disappointment in my heart. After the stitches were removed I think I saw him once more to report worse pain. Needless to say I didn't go back to him. Nice scar on my neck though! Another 5 years of medical professionals, hypnosis, lost time at work, lost days and lost moments and so much blinding pain! Saw an infectious disease control guy at Northwestern who said my symptoms mirrored a rare island disease. He tested, I didn't have it. He looked at my records of the neck operation but said that doctor hadn't really diagnosed what the cause of my problem was or what the infection was so he would have no way of knowing what happened then. He would only offer cortisone shots to the base of the skull. No thanks. In 1997 I went to a facial surgeon, who diagnosed classic glossopharyngeal neuralgia, put me on carbamazepine and told me I'd be on it the rest of my life. It doesn't help. The pains keep getting worse and are becoming much more debilitating. I've spent the last 49 nights without more than 3 hours of sleep at a time because I can hardly stand to lie my skull sideways or stand the pressure from the pillow. If my head is sideways more than 3 hours or so, I get the stabbing...full force and end up bolt upright in my bed trying anything to stop the pain. If I lay on my right, the pain comes on the right. If I lay on my left, the pain comes on the left. I've been home from work for the past 2 weeks in the most horrible pain, hardly able to talk or move my lips or my head. When the pains start coming someone in my family usually grips my skull (forehead & lower back of skull) to try to offset the pressure in my head. Other times the pain is too great for anyone to be able to touch me. There is alot of screaming, alot of crying and alot of frustration. My boyfriend loses lots of sleep. He's frustrated. He has found a way to momentarily cut off some of the main stabbing pains by pressing pressure points on my hands, feet, arms, thighs, skull, etc. My mom came to sit with me for two days. She cries when I'm screaming in pain but also does a good job at gripping my skull to relieve pressure. But the pain has been so bad for the last two weeks. It got so bad last week I ended up popping a morphine pill which didn't even take off the edge. Carbamazepine isn't doing anything either. There's so much pain I can't think straight. I can't function like this. There is rarely any relief. Seems worse around my period. The episodes seems to be lasting longer as I'm getting older and becoming much more awful. I'm not eating well because of the pain and I'm already a thin 98 lbs. I own a business. I'm going through a divorce. I can't deal with this pain anymore. I can't stand the control this has over my entire life. I don't seem to be able to find any sufficient research going on with regards to TN or GN. Who claims to be the best in this field? Which facility specializes in this field? I'm convinced my TN/GN is caused by an infection or was originally set off by the mono/hepatitis. I've read of others who also had mono or a low grade infection prior to first pain. Because of my divorce, I no longer have insurance so I'm unable at this time to seek medical help. With new insurance does this become a pre-existing situation? Will I ever be able to get new treatment coverage for this since I've had it for 22 years? Is anybody out there with TN or GN on disability? I can't think of many disorders as incapacitating and disabling as this. I wish nobody had to suffer from this terrible disorder and that some great person could find a way to put this pain under control. It is truly devastating to those who have it and their families. If I can be of help to anyone..just e-mail me Thanks

Name: EJ
City:
State: PA
Country: USA
Diagnosis: Glossopharyngeal Neuralgia
Treatments: Tegretol, Baclofen
Comments: thanks for providing this forum
Date: 12/20/99

Story
I have had the symptoms for two years. It seems they became worse after surgery in Feb. 98 to remove a tumor from my tongue. It has gotten much worse in the last few months. I want to say to Tony (anonymous) that it was astonishing reading his story, because it sounds so much like mine. I made the rounds of ENTs, of course worried that cancer had recurred in my head/neck area. My symptoms include: pain at back of my throat, difficulty using my voice (actually hurts to talk), neck, shoulder & arm pain (left side), pain in ear, plus increasing upper body weakness, and high blood pressure, (it was always low before).

These seemingly disparate symptoms made no sense to me or to most of the drs. I'd seen, until my ENT surgeon finally threw up his hands and said, " Maybe it's neurological-could be 9th cranial nerve!" I jumped on that and began to learn more about glossopharyngeal neuralgia, which brought me to a consultation in Pittsburgh last month, and was told I had GN and was a candidate for MVD. I then took all this information to my local neurologist who is quite conservative and wants me to try all medical possibilities before chancing surgery. but he moves very slowly!

Tegretol made me very sick, so he took me off of it, and I am now on Baclofen 15 mg. 3xday, but it is not enough. I will ask him to try Neurontin this week--I need something to get me through the holidays! I do think I may wind up having MVD, but that decision is on hold for right now. I do get the shivers when I think about anyone drilling a hole in the back of my skull and messing with my nerves and blood vessels back there. I need to hear all sides of the surgery story.

Thanks for your help.

Name: Madilyn G.
City: warren
State: Mi
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Kinesealogy
Comments: I didn't want to live my life on drugs!
Date: 12/19/99

Story
I had my first bout with this disease about four years ago. I suffered for almost two years with symptoms that got worse and worse as time went on. I went to several family practice doctors who kept sending me to Ear, Nose and Throat doctors or dentists. Finally, I was diagnosed correctly by an ENT. The weekend before my first appointment with my neurologist I landed in the hospital with unbearable pain. The neurologist recommended several different kinds of drugs, all of which made me sick and exhausted. i was too tired to play with my children and too tired to work. A dentist finally suggested I see a kineseologist. I left the office pain free after an hour long visit. After two weeks of three visits a week I was completely pain free! I suffered no reoccurrences until a few months ago when a virus settled in my trigeminal nerve and set me off again. I also suffered a severe double ear infection so I did not recognize the symptoms immediately. I was diagnosed again last week after spending two months in pain. Again I was prescribed numerous pain medications. Again I made the decision to live my life without mind numbing drugs. I visited the kinesealogist and I am about 80% cured after just on half hour visit. I am totally convinced that this treatment works. I know that I am blessed with a very good doctor and others may not have that luxury. My doctor takes the time to work on me, sometimes spending a full hour.

In case you do not know what kinesealogy is, I will try to explain. (I also hope I am spelling it correctly.) A kinesealogist is a chiropractor with a special "degree" or focus on the muscles of the body and how they all relate to one another. My treatment consists of my doctor first "identifying" my problem with a series of "tests." These "tests" include such examples as the doctor telling me to put my leg or arm etc. in the air. He then will tell me to resist his pressure. If I can resist, all is OK. If he can push my leg or arm etc. down then I have a "problem" in that area. The doctor will then pick out an area on my body (based on his tests) to "rub." These are areas that I never identified as in pain previously. In other words, these are areas that I never would have thought to say they hurt. But when the doctor "pokes" the area, sure enough, it feels like it does when you touch a bruise. The doctor will "rub" the area in a circular motion. He says he can feel a node or "spot" and he rubs until the spot ceases to hurt. This usually takes 10-20 seconds. He calls this "clearing." For treatment on my TN the doctor will typically rub my arm, neck, rib cage, legs and inside of my mouth. This sounds crazy but it is the only thing that has ever helped me. My neurologist suggested surgery or drugs but I opted for the least invasive procedure I could find.

I would highly recommend to anyone unhappy with the drugs or afraid of the risks of surgery to try this treatment. Costs are minimal--usually about $60 a visit. My insurance covered mine with just the cost of my co-pay of $10 per visit. This is not an invasive treatment, there is little pain associated with it (just a mild discomfort such as touching a bruise) and it works very quickly. As I said, I was totally cured in 2 weeks when I was at my most severe and 80% cured in just one visit recently. Once you are better, there is no need to keep returning to the doctor unless you have other problems.

Once caution: Make sure your doctor is qualified. If he is not or you are not happy after a few visits, try another kinesealogist. A good doctor will work with you for a minimum of 1/2 hour the first time and 15-20 minutes each time as you get better. You should see significant results in the first visit and should be 80% or so after 3-4. No drugs are usually used with this type of treatment, however, your doctor may recommend a homeopathic or herbal supplement.

Good luck to all who try this. I know it is the only thing that has worked for me. I have also used this kind of treatment for other problems (my feet and knees) that other doctors wanted to operate for. Best of luck!

Name: Stephanie
Email: sncollins2@cs.com
City: Marietta
State: GA
Country: USA
Diagnosis: Atypical Facial Pain
Treatments: Carbatrol, Advil, Alleve
Comments: Nothing really helps.
Date: 12/15/99

Story
Hello. I am new to this so bear with me. My first symptoms came about a year ago while at work. My tongue had swelled where I could not talk. The right side of my face swelled, noticably, and I was disoriented for what seemed like forever. It was actually five to ten minutes. I was finally able to down some Advil which reduced the swelling. From that day on, I have had headaches, toothaches, ear-aches, memory loss and a tingling in my scalp. 24/7, never going away. I tried my chiropractor which relieved some tension in my neck helping with the headaches. The pain in my tooth seems to come and go. Like others, I have had MRI's, CT scans and a useless doctor. Everything showed up normal. No doctor has ever taken a blood sample even upon my suggestion. I do not know what may come of that only that it would have a starting point. I am tired of having symptoms treated and seeing several doctors. When the pain is too much, I become mean and short tempered to those around me. I have even misconstrued the meanings of actions and words as if my friends are out to get me. Sometimes the pain is so bad I cannot open my eyes or sleep soundly. Needless to say, I am tired, always. So far, no help has come my way. I am in search of new doctors and treatment

Name: JOJO
Email: Bonjo2661@AOL.com
City: Syosset
State: NY
Country: USA
Diagnosis: Atypical TN
Treatments: Zovirax, Nortryptyline, Fiorinol, Advil
Comments:
Date: 12/12/99

Story
After difficulty numbing me for root canal, I was finally able to complete rootcanal by injection directly into the nerve. Upon follow-up (post rootcanal)I awoke the next morning with spiral lights flying on the right side of my head, having never had a migraine, I assumed this was the aura before. I never did get what felt like a migraine, but rather terrible unbearable sinus-like pressure for nearly 3 weeks. After 2 MRI's of the brain and sinus it was determined that this must be some "quirky" virus that will just have to run its course. I have since been to two neurologists, and oral surgeon, a opthamologist, a TMJ expert and for physical therapy. Not one of these specialists ever mentioned TN. It was my brother-in-law, who is studying spinal surgery and in his 5th year residence, who immediately felt it sounded like TM. I have tried Nortriptyline, which made me feel extremely jittery and anxious. Fortunately for me, I do not have the severe pain mentioned, but rather numbness to my upper teeth, sometimes with a burning feeling, ear pain, temple pain, scalp pain and sometimes behind the eye pain. The only possible explanation at this point it TN. I will now try neurontin and acupuncture, with the hopes that this will help. Up until 3 months ago, I was a perfectly healthy 38 year old wife and mother of 2 young children. I have been blessed with a wonderful life and resent the doctors suggestion that this is stress related. The only stress I have is not having a diagnosis for pain that has plagued me for 3 straight months. I am hopeful that perhaps neurontin may help, as most pain killers do not. I will not give up my pursuit to return to a normal life.

Name: Thomas
Email: oilovetam@aol.com
City:
State: Il
Country: USA
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Treatments: Many of the same medications
Comments:
Date: 12/11/99

Story
My girlfiend has been diagnosed with this disease and has dealt with it for over 20 yrs, She is 37. and for us, life has been a roller coaster. We are, I guess fortunate to not have a daily constant pain, but it comes in waves and lately it has come after she has laid down for 3-4 hours. I have been able to help in the pain management by using pressure points and cranial pressure with my hands to help REDUCE the pressure and the pain. Sometimes if I get it fast enough, it seems as if it doesnt want to fight and will only be that brief moment, other times I struggle to find the right point for the right type of pain and it frustrates us both. I feel much better helping than standing and watching, We have recently decided to start a chat on AOL to help discuss this affliction and the ways we all deal with it. Please feel free to email us and we will put you on a notification list for the dates and times. We will also make a copy and email to those who are unable to attend. I wish you all a pain free holiday, and please keep in touch..

Name: Laura B.
Email: llbam@aol.com
City: St. Louis
State: MO
Country:  USA
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol
Date: 12/07/99

Story
I will be having the gamma knife procedure done next week and am a little anxious about the procedure. I would appreciate if any one would share their experience with me. Mostly concerning the application of the metal brace and any symptoms or affects after the procedure was done. thank you

Name: kathy
Email: katsstorm@yahoo.com
City:
State: iowa
Country: u.s.a.
Diagnosis: Trigeminal Neuralgia, Atypical TN, Atypical Facial Pain
Treatments: most meds
Comments: take control of your treatment!!!!!
Date: 12/05/99

Story
Hi! My name is Kathy. I wrote my personal story in here a long time ago but i have important updates!!! I have had T.N. for about 3 years now. I have seen about 35 Doctors, Dentists, Chiropractors, Neurologists and 1 Neuro Surgeon. I am currently in pain most of the time. Some times is bad and sometimes its not so bad. I have tried a lot of different medication. Some have helped, some have helped for some time and then quit and some have not worked at all. Results are different for everyone. The medications i have tried are: Amitriptyline (currently 150mg p.d.) Tegretol Clonazepam (currently .5mg p.d.) Neurontin Dilantin Baclofen (currently 10mg 3x p.d.) Ultram Lortab (currently as needed) None of these has "cured" me. But some of them do help!!! I recommend asking you Doctor for any drugs available for T.N. The Internet is a great source for research on medications!!!!! My Great Grandmother (maternal) had T.N. before they really had a name for it. But looking back she had the exact same symptoms. My Mother had T.N. about 4 years ago. She took Amitriptyline (25mg p.d.) for about 2 weeks and her pain went away. She has the occasional jab or twinge but other than that she is pain free. I have come to just about the end of the drug therapy for T.N. I am having Microvascular Decompression surgery done in 5 days and my Neurosurgeon is very optimistic! Most importantly I want everyone to know is that you are not alone and you need to take charge of your medical treatment!!! Do research!!! Find out what treatments are available and demand them. If your Doctor doesn't know, find one that does!!!! I have seen so many Doctors that don't have a clue as to how to aggressively treat this horrible disease!!! If you start taking a medication and don't see results in a couple of weeks...call your Doctor! Any treatment is better than none at all! I have begged my Doctors to help me. (They wont get mad if you suggest medications you have heard about online or by word of mouth!) Explore every avenue you possible can! I have suffered with this curse long enough!!! If I just sit back and let the pain keep me from the great life i should be having...why have a life! So please all of you! Help your Doctors to help you. If anyone with T.N. needs a shoulder or have questions about the treatments i have tried feel free to contact me through my email! I would love to point you in the right direction!!! I am also starting a T.N. support group in North Central Iowa. If there is any one interested or interested in starting one in your area please contact me or contact www.tna.com i hope everyone who reads this is optimistic about this disease. And remember you are not alone...God Bless!!!

Name: Kelli
Email: kellia@ispchannel.com
City: Bend
State: OR
Country: US
Diagnosis: Undiagnosed
Treatments:
Date: 12/04/99

Story
Hi Group; I'm a new member to this and haven't yet been diagnosed. About three years ago, I was diagnosed with TMJ by my dentist and he gave me a sleeping device and straightened my bite, and the pain went away until recently. This time stronger and much more painful. I don't really like to talk about my pain, so I went for about a month without talking about it to anyone. In the mornings when I showered it's so painful in the left side of my face that I have to cry. It feels like it originates in my ear and I thought it was a bad tooth or something, though it's not localized in any one tooth and the dentist has told me my teeth are fine. I was talking to my mom about the pain I've been having and she said that my grandmother had it very bad and that it must have skipped a generation. It was extremely bad for my grandmother when the weather changed to cold and she'd always cover her ears or the whole side of her face would be in terrible pain. My mom got out her "Adele Davis" book which describes various vitamin deficiencies, and it began to talk about the B vitamins being helpful for this condition. In the book it also talked about "emotional anger" and sometimes getting to the root of that problem has been known to help, though I don't really think that's my problem, I'm willing to explore any avenue to stop the pain. Lately I wear a hat over my ears and face when I go out in the cold and it really does help alot. I have just spent time reading what others have experienced, and even though mine is just a knew onset to this pain, my heart goes out for all that have suffered for so long, and it does sound like the pain increases through the years to many victoms. I am 40, and determined to not spend my life with this pain. I don't really believe in taking prescribed medicines for long periods of time and will seek other avenues for pain relief. There is an acupunturist in town, and that will be my first "test" if the pain hasn't found relief from the massive doses of the "B" vitamins that I currently put myself on and also do a little soul searching for things that I might be angry about that I've suppressed. Though this pain is very real, and I hate when a medical profession says things are "mental" therefore, I'm afraid to go to one, until try to heal myself first. Thank you everyone for sharing your stories and keep up this great website.

Name: Liz
Diagnosis: Trigeminal Neuralgia
Treatments: Carbamazepine, Dilantin, radio frequency rhizotomy
Comments: bad side effects
Date: 12/03/99

Story
I am writing about my mother who is 69 and was diagnosed a few months ago with TN. She had dental work done last winter and that's when her "electric shocks" in the face began, but they only appeared from time to time and were bearable. This past September, they came with a vengeance. She thought it was teeth related and ended up having several teeth pulled, but that did not solve the problem. That's when she was diagnosed with TN. The medications she was given made her sick to her stomach, dizzy, weak and extremely tired. They also did not help the pain and she began losing weight rapidly. She had rafio frequency rhizotomy in November and that seemed to take care of the pain, for now, but she still had to continue the medication. Well, the medication has had such a bad effect on her that her gums began to swell, she had a terrible burning sensation in her mouth and throughout her entire body and is getting weaker by the day. We checked her into the hospital to run tests and they fed her interveniously to build up her strength. The doctor told her to stop the medication for now (she has been off the medication for four days) but is now noticing the pain slowing coming back. She's also depressed that she had her teeth pulled and may never be able to get dentures for fear of the pain returning. Is there anyone out there that can help. She was always such a strong, active woman with a positive outlook, but is quickly losing her optimism. We are all concerned. PLEASE HELP. Thanks!

Name: Yvonne G.
City: Forth Worth
State: tx
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Tegretoll
Comments: Thank you for having this web site.
Date: 12/03/99

Story
I am a 54 year old female suffering from TN for two years. I was fortunate in that the doctor who had treated my father for the same disease, has also treated me. He feels in my situation it may be inherited.?? I have taken 100mg of Tegretol with occasional two Alleve. Was in remission for about four months last year. Last night I sat and tears dripped off my face at a restaurant due to such severe pain. Not only was I embarrassed, but I felt sorry for my husband. What could he do? Nothing...Today I called for my first pain medication besides the Tegretol also, had to up my Tegretol dosage. The thing that immobilizes me is the "no answer". Sometimes I can laugh and it sets it off..sip coffee..chew..I have been unable to BLOW MY NOSE FOR MONTHS. You don't realize what a privilege that is until you can't do it. My pain is like a nail being driven in your check bone right under the corner of my eye-with a thousand hot needles being stuck in it also. I was struck by what are some of the things which bring this condition on that you all had listed on the web site. Infection being one of them. I had worked in a Doctor's office for years, and had become ill with Mono and a severe sinus infection - Not had many good well days since.

Thanks for the web site. Just reading about TN helped my today. Especially after I quit crying from pain. Sincerely, Yvonne G.

Name:  cd 
Email: caryl@otvcablelan.net
City: Osoyoos
State:
Country: Canada
Diagnosis:  Trigeminal Neuralgia
Treatments: tegretol
Comments: well it don't help much
Date: 11/23/99

Story
Hi I have had this since I was 11. It was always fun it gym class running along and it would strike , most horrible pain . wasn't allowed to sit out either . From then till now it has been on and off . I am now 40 and think I have had all I can take The first cure they gave me was to file down my filings ! That didn't work so I got some sort of pain pill that wasn't much better than a aspirin . I suffered then right up till I was 17 and remember to this day the moment the doctor figured out what I had though I was so so young, he was baffled .. Don't remember remember what he gave me either but it did not help at all. it wasn't until I moved to Canada that a doctor here gave me my first tegretol. Which helped so much. There was still a lot of pain as i was allowed to take only 3 a day It came and went in not particular fashion . I tried different things , one time a tens machine . That made me laugh as it sent the sensation to my face that was coming out ! Couldn't use it. Went to see a dentist after that and he figured it was a crooked set of teeth so he invented me a brace to wear at night ..didn't work .. Made it get a little more angrier if anything It has never really gone away for any length of time 6 months or so and it is back again. I hate it I have had 6 peaceful months this last little while and it is back . I hate to go to sleep at night , and when i do it is on 2 pillows so I am up in the air some. I find if I lay flat it is worse and it zaps me at night in my sleep. I have been seeing the chiropractor for 2 years and though it has not stopped it completely it has helped in the severity of the attacks . That is all the treatment that I have had on this thing , went to consult a neurosurgeon in the Vancouver area as one doctor told me there was a new cure where they used a laser to kill the nerves .. My hope died there as the doctor had never heard of such a thing. He offered me brain surgery BUT I was to young to take such a chance . So here I sit 4 years later looking for some way to have it done . I don't want to handle this pain anymore . I have it upper and lower. Though I am lucky this time round i am able to wash my face I just can't brush my teeth . I get a awful rage when it is happening ,when it is done I cry and that makes one start all over again .its very hard on my family as they want to help me or hug me and I can not stand to be touched at that time for fear of it starting all over again. I am sick of the pills (tegretol) as I don't know what I am doing half the time. Cant remember anything , they make me ill and are not good for the body. The brighter side ...........I try to find one most days but even a smile is painful. If anyone has first hand experience of the surgery or the alcohol shots and would like share that info with me I would greatly appreciate it . I have read that some peoples face goes numb and they have no more feeling with the alcohol shots .The brain surgery is what I am really interested in .What the effect of that is if any ? As long as I can come out and eat a great big hamburger i would be interested in that route . Please excuse any spelling errors in here I look at something on this medication and it looks fine but really isn't all the time . Thanks for letting me share Caryl From Canada

Name: Dick
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin, Baclofen, and Tegretol
Comments: Be sure you can contact your doctor I was not so lucky
Date: 11/19/99

Story
I have suffered for 3 years with this condition. I was being treated with Neurontin and Baclofen with poor results. My doctor changed my treatment to tegretol and Baclofen. I developed a rash after 3 months on tegretol. I attempted to contact my doctor but he was on vacation and I was told that he could not be contacted. I was asked if I would like to make an appointment next week. I developed Stevens Johnsons and was admitted to the hospital for 3 days for treatment. I have now decided to have surgery to correct the problem. Surgery is just 3 weeks away and I am looking forward to relief of the pain. 

Name: Sylvia C.
Email: Sylclemm@home.com
City: Waterloo
State: Ia
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Surgery
Comments: Nightmare
Date: 11/17/99

Story
I'm telling this story about my Sister. She had "Tic". For two years she suffered. Terrible pains in her Jaw. I took to to Dentist, Dr's Neurologist & Neurosurgeons. After trying several different drugs such as Tegretol, Dilantin, Neurontin and Baclofen, she had an allergic to all. Finally She underwent the "Needle Rhizotomy". The first time the Dr. "burned" the nerve twice. After a week the pain returned. She underwent the same procedure again ,this time he burned it 5 times. After two weeks the pain returned. Then she underwent the Percutaneous Rhizotomy. She was in the Hospital two days and went home. This was 3 Months ago. Her "tic" pain is gone .However she has double Vision in her eye, has frequent eye infections and Muscle Spasms. Her face sags on that side she cant wear her Partial Plate and she looks like a different Person. She cannot see well enough to drive anymore. Is in a deep depression and i really feel sorry for her .Has Anyone had this NIghtmare?????? Thanks for listening .She is 66 years old but was a very attractive lady before but now she looks very Bad. I try to take her places but she won't go much because she feels "ugly".A nd also feel that she is a Burden to everyone.... Thanks Syl

Name: Candice
Email: propinquityclb@alo.com
City:
State: CA
Country: USA
Diagnosis: Atypical Facial Pain
Treatments: I refused typical treatments (sometimes take pain meds)
Comments: Are you numb?
Date: 11/16/99

Story
I am a 30 year old female. In October of1999 I went to the dentist to have an old filling replaced (molar). Directly after, I felt like my bite was some what off. I went back to the dentist several times to have my bite adjusted. Shortly after I began feeling pain in my jaw. ENT gave me DX: TMJ. Then my face & half of my tongue went numb. Went to neurologist DX: Trigeminal Neuralgia. Over a year and many other dentist and doctor appointments later, the electric shocks have passed. I still feel a lot of strange sensation but not nearly as much pain as in the first few months. I do however feel cramping and burning. My face remains numb (left side) as well as my tongue and lips. Although I have had two MRI scans that ruled out MS, veins or tumors, something that really bothers me is sensations I feel in the back and side of my head. Sometimes I actually worry about my mortality. I fear a blood vessel may burst. Is this sane? Not the best way to began your thirties. My last DX: Atypical facial neuralgia. If you have similar symptoms I would like to hear from you.

Name: Terri
Email: Terrilee.watson@telus.com
City: Burnaby, BC Canada
Diagnosis: Glossopharyngeal Neuralgia
Treatments: clonazepam, tegretol
Comments: tegretol helps, but too early to tell much
Date: 11/12/99

Story
Hello everyone, I have been suffering since '94 and misdiagnosed until recently. I was surfing the net and found this site. I brought the information to my Dr who at that time confirmed my diagnoses. I was scared, but relieved that I hadn't imagined all this. The ENT kept telling me that I had allergies, chronic sinusitis etc, so I kept thinking it would go away. Here it is 1999 and I am suffering hourly. I suffer with pain only to the left side of my face , head, ear,,eye and throat. I get burning, stabbing electrical shocks as well as cramp-like symptoms from yawing and swallowing. I feel like there is an ice cube behind my left eye. Feels like someone has put the boots to my face. On top of all this my heart beats irregularly and speeds up so fast I cant talk. Has anyone else had this. I have an infant and I am so tired I cant keep up. The pain just knocks the heck out of me. Does anyone have any suggestions for me.

Name: Sharlyn
Email: wesmith@one.net
City: Burlington, KY  Boone
Diagnosis:  Trigeminal Neuralgia
Treatments: carbamazepine
Comments: All I want to know at this point is there anyone out there that has been healed from this condition? Either Divinely or otherwise
Date: 11/10/99

Name: Eileen
Email: pebscarl@erols.com
City: Washington, DC USA
Diagnosis:  Atypical Facial Pain
Treatments: Neurontin, Percocet, Root Canal, Extraction
Comments: Seeking Advice
Date: 11/10/99

Story
I began having pain in my lower right jaw in February of 98, after my dentist put a crown on a molar. The pain grew more frequent and stronger, until it became chronic and sometimes excruciating. After a root canal this August, the pain worsened. An MRI & X-rays ruled out cancer & MS; a neurologist proscribed Neurontin, which helped for only a short time. The tooth was extracted last week; Percocet provides the only relief. I would like to hear from anyone with recommendations or similar experiences, and recommendations on whom to see in the DC area, if possible. Wishing all readers a pain-free moment. . .

Name: Jill V.
Email: verleej@mjsc.com
City: Grand Rapids, MI  USA
Diagnosis: Trigeminal Neuralgia, Geniculate Neuralgia
Treatments: Neurontin / 600 mg per day
Comments: I could use some answers
Date: 11/09/99

Story
I am a 35 year old woman and I have had pain located in and around my ear, on and off, for about three years. It has gotten worse and lasted longer each time. I went to a neurologist who diagnosed it as Trigeminal Neuralgia. However, everything I have read about TN leads me to believe that that is not what I have. I read some descriptions of Geniculate Neuralgia, and that really sounded much more like what I experience. The doctor put me on Neurontin, which seemed to help for a while, but made me horribly sleepy all the time. I eventually lowered my dose and went off the drug. The pain came back a couple days ago and I'm afraid I may have to start the medication again. Another thing the doctor has been watching me for is MS - due to her diagnosis of TN and some other symptoms I have experienced (and due to my age at the onset of the TN or GN). Does anyone know whether or not Geniculate Neuralgia is as common in MS patients as TN? I haven't been able to find much about it anywhere and any help I could get would be greatly appreciated. Thanks!

Name: Joe
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol xr 200MG every 12 hr. & baclofen 10 MG tablet zen 1 tablet twice daily & and pain pills as needed
Comments: worse pain I have ever had; even worse than kidney stones
Date: 11/08/99

Story
I had this condition first in 1994. It went away after about 1 week of taking same medication. This time in1999 it's not going away so fast. I have been suffering about 3 weeks. When I first got it this time it seemed to follow within 1 day of 3 yellow jacket stings. About the same time I was taking an antibody for another condition. Well within 3 days of taking the antibody along with the tegretol & baclofen it went away. Then to my sorrow I was stung 2 more times by yellow jackets and within 2 days the problem returned. My doctor says the antibody thing was coincident but I have had it now for about 2 weeks. Except for 2 times the pain has not been as bad as in1994 thank the lord. It seems to hit me unannounced when I eat, rub my right side of my face, or talk a lot. My right eye waters and I have nasal drainage when I eat. I am 69 years old and in good health otherwise except for a slight high blood pressure which I take medication for. I can work in the yard etc. as long as I keep my mouth shut, dont chew gum or rub my face; no problem.

Name: Trish
Email: trish2u@aasdcat.com
City: Altoona, PA  USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Neurontin
Comments: Having break-through pain
Date: 11/07/99

Story 
Hello, my name is Trish. My terrible ordeal started about three years ago, when dining out, I had a strange sensation in my jaw. It felt as if it were all rusty and to open my mouth to eat was very painful. The pain gradually turned to excrutiating electric-like shocks shooting up through my back gums and into the right side of my face. It also felt like there was something shattering inside my face and I had burning sensations. My dentist said I had TMJ. I accepted that diagnosis and tried over-the-counter medicines, all of which did nothing. I couldn't eat, couldn't talk, couldn't brush my teeth, couldn't touch my face without being in pain. I was in the shower one day and without thinking touched my face with the wash cloth and the pain was ripping through me again when I started crying and begged God to take it away because I couldn't handle any more pain. It went away! I was sooooo happy! This lasted for about two years, and the pain was back again, even worse, if you can believe that. I went to a so-called specialist that my dentist referred me to to rule out TMJ. That was ruled out, but the "specialist" told me I was suffering from muscle spasms. I had accidently run across an article about a man who had this horrible facial pain called trigeminal neuralgia. I asked him if this could be what I had. He actually looked at me like I was stupid and said that THAT was an extremely painful condition that never goes away and I did not have anything like that. I told him that I DID have extreme pain and he just told me again that I was having muscle spasms. My mother was relieved, but I knew better. This was not a muscle ache, this was caused by a nerve. This much I was sure of. I then went to my family doctor who gave me pain medication that did nothing. I went back again to another doctor who finally listened. She didn't prescribe anything that day, but said that she would look into it and get back to me about it. After two weeks or so I went back and she prescribed Neurontin. With the first pill I took, the pain started subsiding. Within a week or two, I was totally pain-free. I COULD EAT AGAIN! I COULD TALK AGAIN! I WAS ALIVE AGAIN! I have been on the medication for about eight months and within the past month I have been experiencing break-through pain. Each day it is getting worse. I dread what I know is coming and I am so afraid. I have an appointment next week and I hope that there is something else that will work for me. I will have no health insurance in a few months and the medication that I am taking is about $210 a month. I am so afraid that I won't be able to afford the medication, and worse yet, that if I need to have an operation, I won't have any insurance that will cover it. I am also afraid of the side-effects, although anything is better than suffering like this. My heart goes out to all of you who are going through this also. You feel so isolated and alone because no one can understand just how excruiating the pain is. I have five children and am a single mother, so it was hard for them also when I was in severe pain. I would get angry at them just for asking me something because I couldn't talk without being in pain. I couldn't even suck through a straw. The one thing that did help before I got medication was when I could open my mouth enough to eat a milkshake from a spoon, I would put it where it was hurting. I guess the coldness numbed it and I would be pain-free until that wore off. Even a few minutes without pain was like heaven. I have a suggestion. Maybe if we all said a little prayer each day for our fellow sufferers, it could help someone out. It may not take the pain away, but to make it bearable, at least, would be enough. Also pray for doctor's so that they can understand us better and also for better surgical techniques. I don't know why we were picked to suffer this way, but we have been. Do we want it? I know we don't. But we must be brave and at least we now know we aren't alone. That was the one thing that terrified me the most - when I didn't know what it was, I thought no one did. I thought I was the only one suffering this way. I wouldn't wish this on anyone, but to know you aren't alone is somewhat comforting. I thank God I got this computer and have the knowledge that I do now about this mysterious disease. God bless you and you will be in my prayers.

Name: Isela H.  
Email: Ihernand@acuson.com
City: Mountain view,  CA  US 
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol and carbamazepine
Comments: I will like to hear more about treatments and doctors and hospitals were they be able to help.
Date: 11/05/99

Story
Hi my name is Isela, and I hope you can help me,

My mom is 77 she is been suffering from trigemina neuralgia for all most 20 years, we did not know until few years ago that this horrible pain is because she had what is call "trigeminal neuralgia

she did not tell the family for about 15 years, because she dont' want for us to worry about this , her pain became horrible very intense, and she is begin us not to let this pain make her suffer this way. ,I can't see her rolling on her bed imploring us to do something for her because she can't continue living like this her pain is on the rigth side of her face, and some times she will get her right side of her body paralysed, she can't talk, move, touch,or eat, she see the doctor and he said that she had this sikness trigeminal neuralgia, and give her the tegretol,the she is been taking for some years, now this medicine is not doing notthing to her, she has been desintosficted from all the medicine , about 4 times allready, but also she is been affected by de side effects, like not valance on her body, nerviouness, tremors seking hands yaw problems an so on, she have hight blood presure, and I know the she will get worse as she is getting more older, I can't she her suffering, beggin to us to end this pain, yealing crying, and rollin on her bed because of the pain,she is the most precious gift the God had give me, and I want to stop her pain!, can some body help me! Please , I need to find help any were Thank you all, and God bless you.

Name: anna C.
Email: rb@gna.es
City: Girona, Spain
Diagnosis: Trigeminal Neuralgia,  Atypical TN
Treatments: tegretol / tranxilium
Comments: no results/ cerebral resonances negative
Date: 11/04/99

Story
This is my mother's story (anna). She's been affected from TN since 1994 (aprox). She tried tegretol but she left it one year ago without results. Cerebral resonances negatives the nerve is not affected but the pain is real.She doesn't have an specialist that guides her. She has visited facial dentist and he say that she have the jaw completly eroded because of emotional problems. She is a very introspective person with a lot of traumas, but she doesn't battles with them.We think that it is an atipycal TN because she doesn't have the nerve affected. Can it the TN be psychosomatic?? Actually she is in psychiatric treatment, since 9 months ago, but the pain restarted after 1 year of relaitve calm in a very strong way. She's is desesperated.We need some solution urgently. Thank you.

Name: simone h.
Email: simone@cafebep.a2000.nl
City: amsterdam, netherlands
Diagnosis: Anesthesia Dolorosa
Treatments: uncountable
Comments: mail only about anesthesia dolorosa please
Date: 11/04/99

Story
My name is Simone i'm looking for somebody who has Anesthesia Dolorosa, or can give me any information about treatments of this disease. I'm writing this e-mail for a dear friend of mine who's suffering from AD. The doctors and professors in Holland can't help her anymore. She's in pain 24 hours a day. Living has become so hard for her that she's considering euthanasia. The only thing that stops het is her 11 year old son... She's been treated with all kinds of drugs and surgery for 10 years for face pain. As a result of 'bad' surgery she now suffers from AD she's been told the day before yesterday.

Please write me if you have the same problems or know treatments to reduce the pain.

thanks a lot

Name: SKYE P.
Email: RHNEE@HOTMAIL.COM
City: KANE, PA USA
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: PAIN MEDICINE  PERCOCET
Date: 11/01/99

Story
Hi my name is Skye Pennington and I am 16 years old. I was first told I had trigeminal neuralgia when I was 14 years old. I woke up one night with pain so bad in my head, face, cheek and chin so bad I thought I would die before I got to my mother. I got to my mothers room and by this time I was crying so hard I could not speak. I was in so much pain. My mom calmed me down so I could tell her what was wrong and then she took me to the emergency room at our local hospital where they gave me Tegretol, and then a shot of visteral and Demerol. It made it better. I was sent home on Tegretol. By the time mom got me home which was 10 miles, I was vomiting so bad she had to call the hospital back and they said just to watch me all night, it could be the medicine. The next day mom called my pediatrician and took me there when he told me he thought it was Trigeminal Neuralgia... HE said he wanted to send me to my dentist first to make sure it had nothing to do with my teeth, I went to the dentist and he said no it didn't. It was trigeminal neuralgia. So my pediatrician sent me to a neurologist in Olean, New York who told my mom we were wrong it was facial migraines. In two months he had me on 5 medications and my mom said no more. She took me to my pediatrician and told him she wanted a new doctor. We found Dr. Peter Jannetta in Pittsburgh, Pa who helped us out so much. He tried a couple medications but when they did not work, he told my mom surgery would be the best route. Mom agreed. I had the microvascular surgery in May of 1998 and it was successful for 1 month and the pains started back but not 1/4 as bad as they were. My mom and I love Dr. Jannetta as he is the best. Today I am back having the pains in both sides of my head and I am waiting now to go back to Dr, Jannetta but I know and so does my mother that if there is any way or any cure Dr. Jannetta will find it and do it for me. I am only 16 and I want my trigeminal neuralgia to go away so I can quit taking the pain medications and go back to school with my friends. I am hoping I get my wish, Skye 

Name: Jan
City: Ga, United States
Diagnosis: Trigeminal Neuralgia
Treatments: Suggested pills.
Comments: Didn't want to, too many side effects.
Date: 11/01/99

Story
About 3 years ago, I woke up experiencing facial pain on the right side. I couldn't hardly wash the right side of my head. I couldn't hardly eat. It hurt to walk, talk, and it lasted for weeks. It finally went away. After 3 or so years it came back, worse than ever. It lasted over a month this time. I went to my family doctor and he said that I had TN. He didn't tell me what I could do for the awful pain that I was experiencing. I made an appt. with a neurologist. He told me there were several drugs that I could take. Some of them helped and some of them may not. He also said that surgery would be his last resort. I decided not to take anything at the time. I figured, why cause something else to happen when I was in bad enough shape as it was. I suppose if it gets painful enough, I will try anything. That is better than wanting to be dead. After all I have 2 beautiful children that need me. But, when the pain is so bad, I can't do anything with them. I can't even talk to them without it hurting. It makes me feel so guilty because, I have always been so happy go lucky and been the life of our house. They depend on me to keep things going and making them laugh. I substitute teach at the local schools and thank goodness, I can take off when the attacks hit. There is no way I would go out in public because it hurts too bad. It even hurts to smile. And, that is something I do all the time when not in pain. When I first found out I had this, I felt so alone and doomed. I had never heard of this before. Thank goodness I can now talk to others that can relate to this terrible pain. It really helps! I have been reading about some of the remedies that others have been trying and will probably give them a try. I have also found that some medications that I have to take for something else effects that nerve later. Tylenol doesn't bother it, so, I can take that for headaches. I'm just wondering if for some reason I have to have surgery if those medicines will affect it later. I am hoping and praying that something will someday help all the people that are affected by this.

Name: Rick L.
Email: rlemek@gtech.com
City: Harrisville, RI USA
Diagnosis: Trigeminal Neuralgia

Treatments: currently on Dilantin and Vicodan for pain
Date: 10/27/99

Story
I was diagnosed with TN about 4 years ago and was treating it with tegretol. I had been pain free for 1 1/2 years before the pain returned with a vengeance in August (99). The tegretol didn't work, I then tried Neurontin with no success and then Dilantin. The Dilantin provided some relief but then I experienced breakthrough pain, so my dosage was increased and I was also prescribed Vicodan for the pain. I am feeling no pain but my quality of life is awful. The side effects of the medication leave me feeling tired, confused, slow to respond, uncoordinated and other such side effects. I have been on medical leave for the last month and with each day become more depressed because I don't see many good options for me to make this go away. I have recently met with a neurosurgeon who suggested two possible surgical procedures 1) MVD and 2)radiofrequecy Lesion. I have also heard that some people have found relief from chiropractors and/or acupuncture. I would be anxious to hear from people who have experiences in these types of treatment.

Name: golfered
Email: golfered99@aol.com
City: fort wayne, IN 46807 USA
Date: 10/26/99

Story
73 yr. old male. Diagnosed by 3 Neuro Drs. with paresthesia. Symptoms: began 3/98, semi-numbness from top front of head to chin, lips, gums. Had prickly pins and needles, but this is milder since going on Neurontin, 800mg. per day. Have seen 3 Neuro. Drs. an oral surgeon and lastly a Ent Dr. Have had many CAT scans, MRIs, eegs, emgs, spinal taps and heavy metal blood. Nothing was found. The last was a facial CT referred to an ENT Dr. He showed me that all my air pockets are clear and other than a deviated septum, slight, there is nothing wrong, sinus wise. But Neuro Dr. at IUmed believes my problem is sinusitis. My condition is very gradually worsening and has me worried. When I eat, my lips and gums feel like they swell, and stay that way for about an hour after. I am beginning to think if I don't find an answer soon this condition will become permanent. Would appreciate info on anyone with a similar condition.

Name: Thomas 
Email: piperarrow@worldnet.att.net 
City: Grand Prairie, TX  USA 
Diagnosis: Trigeminal Neuralgia 
Treatments: microvascular decompression  
Date: 10/26/99

Story
I contracted TN in 1991, not long after having a episode of Bells Palsy. The conditions are not related, it was a strange coincidence.

For the past years I have been treated with varying doses of Tegretol, and some pain medicine, which made things livable enough. Then in July of this year, the pain went into overdrive. The Dr. tried several other meds along with the Tegretol, such as Baclofen and such, but to no relief. I was referred to a Neurologist, who then determined surgery was in order, then I was sent to the neurosurgeon.

They performed the microvascular decompression procedure on me. The surgery was about 4 hours, and I was in intensive care for 5 days, then in a regular room on the nuero floor for 2 days.

Upon waking in ICU, the pain was gone from the TN, however I was deaf in the right ear. At the time no one was overly concerned, but by the time I was to be discharged everyone was concerned. Before leaving the hospital I was sent for hearing testing, and found to have catastrophic hearing loss in the right ear. After being home several days, it was found that I couldn't walk without being terribly dizzy, and motion-sick.

I have undergone tests and am starting physical therapy to help overcome the obstacle I am now facing. I am a store Director for a major superstore retailer, but haven't been to work in 3 months. I can't drive, and riding in a car is terrible, due to motion sickness. They have tried pills and the patch but to no avail. I am still taking pain medicine, due to the constant violent headaches from the ringing in the ear on the deaf side.

I am told that this recovery will be like recovering from a stroke, at least 6 months to get over. I hope that is true, I have had no improvement now in three weeks, and I am currently 6 weeks past the surgery date. I am a male, 45 years old in very good health otherwise. I was also a commercial rated pilot, and have never been effected by motion sickness, and am used to routinely being subjected to any and all attitudes in the air, so that is why this complication is so upsetting. On the other hand, at least the TN pain is gone, which in itself is a huge relief. I believe my surgeon is very competent, and did a good job, I was told this is a complication they sometimes see.

I would be very interested to hear from anyone who has suffered from the complication so I can get an idea what I might expect.

Name: ed  
Email: golfered99@aol.com 
City: Fort Wayne, IN USA 
Diagnosis: Unknown
Date: 10/26/99

Story
73 yr. old male. Diagnosed by 3 Neuro Drs. with paresthesia. Symptoms: began 3/98, semi-numbness from top front of head to chin, lips, gums. Had prickly pins and needles, but this is milder since going on Neurontin, 800mg. per day. Have seen 3 Neuro. Drs. an oral surgeon and lastly a Ent Dr. Have had many CAT scans, MRIs, eegs, emgs, spinal taps and heavy metal blood. Nothing was found. The last was a facial CT referred to an ENT Dr. He showed me that all my air pockets are clear and other than a deviated septum, slight, there is nothing wrong, sinus wise. But Neuro Dr. at IUmed believes my problem is sinusitis. My condition is very gradually worsening and has me worried. When I eat, my lips and gums feel like they swell, and stay that way for about an hour after. I am beginning to think if I don't find an answer soon this condition wil become permanent. Would appreciate info on anyone with a similar condition.

Name: Liza
Email: onesnbadd@aol.com
City: Mechanicsburg, PA  USA
Diagnosis Trigeminal Neuralgia, Atypical TN
Treatments: tegretol 400 mg/daily
Comments: Possible TN?
Date: 10/23/99

Story
My problems all began in Dec 97, when a dentist filled 3 teeth with white composite fillings, in a week I had pain in all 3 teeth, as a result of the 2 out of the 3 teeth has abscessed, in which root canals had to be performed, both tooth canals became infected and it was a long road to what I thought was recovery, I eventually had both teeth capped and thought the nightmare was over, when I began to experience the following problems, I have slight tenderness in my right molar tooth (root canalled) burning pain in my right cheek,, slight jabs (not as severe as the ones I have read) these pains come deep within my cheek and tend to go out my ear, and the most troubling to me is when I chew food on my right side afterwards I can feel my right front tooth clicking and feels loose, but I don't think it is,, also I have a "tic" in the same tooth, Is this a possible symptom of TN? I am desperate for a real diagnosis. I have complained to my dentist so many times, and I think they think I am crazy... I have been to 3 endodontist and they cant find anything wrong. and just 2 weeks ago I went to a neurologist and he suggested it is possibly TN, he has put me on tegretol 400 mg a day which as relieved the burning in the cheek put I still have teeth and facial pain. I am thinking of having the root canalled tooth extracted.. It may be the root of my problem. I am not convinced I have TN. any advice would be appreciated.

Name: Paul 
Email: paul@steers37.freeserve.co.uk
City: Bolton, England
Diagnosis: Trigeminal Neuralgia
Treatments: various drugs, electro-acupuncture and a "block"
Comments: none of the above has worked for me
Date: 10/23/99

Story
When I was two and a half years old I had an accident involving a tractor and a grass roller. (I grew up on a sports centre , my father was the manager). Throughout my childhood I felt different to other kids my age , I could not explain to the or my parents about this strange feeling in my face and left eye. (the accident blinded my left eye). then when I was in my early thirties I decided that enough was enough and tried to seek help. Doctor after doctor , test after test , all to no avail. I had never heard till today of anyone else experiencing the same condition. I have not worked since 91 because of it..........as for relationships, who would want someone who is in continual pain!

Name: Lisa 
Email: Lisa4701@YAHOO.COM
City: LIVERMORE, CA  USA
Diagnosis: Atypical TN, Atypical Facial Pain
Treatments: ELAVIL
Date: 10/22/99

Name: Therese 
Email: TMKSTL@aol.com
City: Manchester,  Mo USA
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Treatments: Medication/Acupuncture
Comments: Some relief/but IT'S STILL THERE
Date: 10/21/99

Story
My first encounter with TN was in June, 1998. It started as a mild electric spark in my lower right jaw, under the only tooth on that side that was still "alive" - I had had two previous root canals on that side. It increased to UNBEARABLE PAIN by mid-June when I finally managed to get to my MD. She prescribed Tegretol - and it helped - a little. Finally the MD at the Pain Clinic added Baclofen to the mix - and I FINALLY got complete relief!!! Until April, 1999, when it came back!! The MD at the Pain Clinic added several different drugs, but no complete relief - Neurontin helped the most, but I still have pain, to varying degrees, almost every day!! I am considering surgical intervention - but it scares me - what can go wrong: the pain might not go away. On the days when the pain is mild I think "I can put up with this" - on days when the pain is intense I realize I can't. I know TN is not fatal - but that doesn't help when the electric shocks shoot up my face, and people I work with laugh because I am trying to talk without opening my mouth!! I guess what I am looking for is an answer!!!!!!!

Name:  Ar
Email: AGH206@aol.com
Diagnosis:  Trigeminal Neuralgia

Story
I've had facial trigeminal neuralgia for 30 yrs. and it is eating away at me. I went through a normal stage, with meds, almost pain free is normal for me! Now it is in my head, ear, jaw and can't touch my face. Combing my hair is a luxury. Taking a shower leaves me exhausted. I can't keep giving excuses to my friends, family for not wanting to go places. I want to be left alone. That is how I feel right now. I know there will be better days. But I miss out on so much. I also have no cartilage in my knees which restricts my walking. I've had drug blocks, rhizotomy, emg, different meds. I do not want to go through any invasive procedures as I hear pros and cons. I don't want another disappointment. I don't want to be a zombie with medications.

Name: poohbear 
City: Chubbuck,  ID  USA 
Diagnosis: Trigeminal Neuralgia 
Treatments: Several surgeries, nerve block, brain surgery 
Comments: I am the daughter of a man with this disease 
Date: 10/16/99

Story
I am the   daughter of a man with this disease. My dad is now 70 years old and was diagnosed with TN when he was 40 years old. He has had the disease on and off for 30 years. He has had several surgeries in various States of the U.S. He has had several different Doctors. He is recently experiencing a reoccurrence of this disease in the form of a burning sensation in his face. When growing up, I remember the pain usually coming in sharp jabs. My dad said they felt like an electric shock going through his face. He told me at times the pain was unbearable. I remember growing up in Idaho on the farm and seeing my dad cry for the first time in my life. He was having one of his "shocking" attacks and begging my mom to get him some help. I had never seen my father cry before like that and it was very frightening for my brother and sisters and my mom for that fact. My dad has had several surgeries and seen various Doctors. I have just informed my mom about this support group and asked her to write me a more accurate history of my dad's disease and the different surgeries that he has had in searching for some type of relief. I know that some of the surgeries seemed to work for a time, but the disease always seems to find its way back. I will try and update this story as soon as I receive more information. My parents do not own a computer and I do not live nearby. I am very interested in information about this disease and would like to help my father any way possible. I want him to be able to enjoy his grandkids without having to worry if he is going to get the disease back.

Name: Renie 
City: Madison, TN USA 
Diagnosis: Trigeminal Neuralgia, NICO, neuralgia neuropathy 
Treatments: Tegretol, Neurontin 
Comments: This medicine is worthless 
Date: 10/16/99

Story
My father has been battling with this facial disorder for approximately 1 1/2 years. He can drink cold or hot fluids and have this painful attack. He has gone for days at a time not being able to eat because of the pain. His physicians have given him Tegretol and Neurontin, which has not alleviated the pain. Now, they have decided that the layer of skin in him gum line was too thin and that may be the problem. I'm not sure if there is anything else that they can try, but I do realize that the medicine he's currently on has not alleviated the pain.

At this point my family is at a wait and see situation. I have spoken with the physician and asked for pain medicine to relax him during his painful experience. Well as you may know this is only a temporary solution to this problem.

If anyone knows any other solution or other treatments which have been successful, please let me know. At this point, anything is worth trying. I really hate to see people at a point where they can not help themselves, especially family members.

Thanks Renie

Name: Golfered 
City: Fort. Wayne, IN 
Diagnosis: paresthesia 
Comments: mri's ct's spinal taps, eeg's emg's nada 
Date: 10/14/99

Story
Have been to 3 neurologists, an oral surgeon and an ENT Dr. Have about 40 MRI, ct, and panorax x-rays of my head down to the end of my spine, along with the tests listed above. I have also had heavy metal blood tests and 24 hr. urine. They can't find anything. They have suggested sinusitis. My symptoms started in March of 98. I experienced semi-numbness on the left side of my face and it progressed to my lips and gums and about an inch up from the tip of my tongue. The last Dr. I saw was a Neuro at IU Med. She said this would go away in 8 months, that was March of 99. 

I believe the condition is slightly worsening. The only medicine I take is Neurontin, 800mg per day. I do take an enteric aspirin a day. This condition makes it difficult to eat, it is an unpleasant experience and I have lost 25-30 lbs . since the onset. Know very little about neuralgia, whether it may be what I have, but would like to know if my symptoms sound familiar

Name: Keith 
Email: B168KM@AOL.COM 
City: Bloomville, NY  USA 
Diagnosis: Tic Douloureux.
Treatments: Tegretol 3X day 
Comments: Works but has bad side-effects 
Date: 10/10/99

Story
My girlfriend has got this thing and it's driving both of us nuts.  She gets a shooting pain in the left side of her tongue. She has seen a DDS, MD, ENT and a neurologist. They told us she has "Tic Douloureux."  They gave her tegretol but the medicine has side effects..it makes her very tired and forgetful.  She drops things because of the pills. It makes the nerves in her hands "jump."  If anyone can give us information on how to deal with this, please do so.  Help. 

Name: Rosy 
Email: ellaeyal@internet-zahav.net
City: Telaviv,  Israel 
Diagnosis: Atypical Facial Pain 
Treatments: Tegretol + Acupuncture 
Comments: Tegretol helped for a while but the real improvement was with the acupuncture 
Date: 10/6/99

Story
The first attack was 11 years ago. I was sure it came from the teeth but my dentist found nothing. I went to a to neurologist and he made the diagnosis of ATYPICAL FACIAL PAIN. He gave me Tegretol. At the first year it really helped but after a year the pain came back, stronger and more frequent. I went back to the neurologist and the only thing he could do is increase the dosage of the Tegretol. This made a very small improvement. One day I have found an article in the news paper written by a doctor who is using acupuncture in some cases including this kind of pain. I went to his clinic and he started the treatment, acupuncture+ electric current connected to the needles. After 3 month of acupuncture I had no more pain and the doctor said that we can stop the treatments for now but I must return to him immediately as soon as I feel the first pain. After 2 very good years the pain returned much stronger but this time the acupuncture didn't help anymore. After 3 month of terrible pain and suffering when I lost any hope, I couldn't eat, hardly drink and almost couldn't speak, I found an article of another doctor who is using a new technique based on acupuncture+ injecting some natural product locally and peripherally. I picked up the phone and I made an appointment. He gave me a few injections and after a 30 minutes I felt much better. In that evening I went to a restaurant and enjoyed eating a good dinner. Of course I continued the treatments twice a week during 4 month until the pain gone. Now I feel much better but some times, especially when I am in cold weather or cold wind, the pain attacks again. In this case I am going back to the doctor for 2 or 3 injections. During all these years I keep on taking the Tegretol 200mg two times a day. I know that there is no cure to my disease but at least I know that I can get some help in case of another attack.

Name: Angie 
Email: ghentha@nicnr.com 
City: Reed City, Mi  USA 
Diagnosis Trigeminal Neuralgia 
Treatments: Several Nerve Blocks/Hospitalization for five days and then strong medication 
Comments: Three packs of Dilantin by IV;Morphine Shots; while in the hospital
Date:  10/2/99

Story
My first experience was six years ago. I was treated with antibiotics for an inner ear infection and the pain went away in about a week. Three years ago it returned and I was treated for osteoarthritis and anti inflammatory drugs and within ten days it was gone. July 2, 1999 the pain returned with a vengeance. Nothing seemed to help it. I couldn't work. I couldn't swallow without having a spell of electric shocks. It started in my ear, went to my temple, my cheek, my jaw, the back of my tongue. In thirty days I lost thirty two pounds. I was overweight, but that definitely is no way to lose weight. My family doctor referred me to a pain clinic where they gave me a surgical block which relieved the pain for about a week. I had two other surgical blocks, but the last block caused the nerve to attack with a vengeance. I was then having the excruciating pain every five minutes and after approximately one minute I would pass out and quit breathing. That was when the doctor had me admitted to the hospital. They put in an IV and started me on two packs of Dilantin. The next day I had a third pack of Dilantin. The Neurologist ordered an MRI of my throat, ear, and brain but they were all normal. I am no taking 100 mgs of Dilantin four times a day; 300 mgs of Dilantin 2 tablets twice a day; and two mgs of Baclofen twice a day. The pain is under control but I still have twinges and some of them are quite strong. I also hate the way the medication makes me feel. The doctor has released me to go back to work on Monday, and I am praying that I will be able to function because I only have twelve weeks to go before I can retire.

Name: Anonymous
Diagnosis: Trigeminal Neuralgia
Treatments:  Tegretol, MVD (twice), glycerol injection
Comments:  Pain began after a car accident.  Initially misdiagnosed as severe emotional problems.

Story
I began reading the stories of others with this condition and felt my experience with TN may contribute. I've had TN for 16 years. After a car accident where I hit my head I began to experience facial pain as well as TMJ (jaw joint pain. Initially the pain was excruciating and the Drs. didn't have a clue what was wrong. As a lot of others I thought it was tooth pain sinus, neck, any other explanation was explored. Finally the dr. decided it was mental. I was put in the hospital for observation and pain control. I continually complained of the pain but when the dr. couldn't find any reason he said I had severe emotional problems which I never had before no history, and needed to stay in the psychiatric hospital. I knew in my heart it was physical but decided to go home and get emotional support while I was seeking treatment and saw a psychiatrist on my own. When I went she diagnosed me with TN. At that point was given Tegretol and relieved some relief. She then sent me to a neurologist and he confirmed it. It helped but not fully so he prescribed pain meds. as a additive to help where the tegretol. left out. Eventually I went to a neurologist ( the one that invented the microvascular decompression) and received that procedure. I was better but it came back in 6 months. Then 6 months later I received a second surgery. The upper quadrant of my pain was immediately gone but the lower never got better. Then I tried glycerol injections but was left with extreme numbness and burning. As of now I am still on tegretol but the help from the surgery has worn off. Six years ago I began to jerk uncontrollably in my face initially and then moved all over. It's called Dystonia and the constant facial movement causes the nerve to act up even worse. I am waiting for a procedure that has minimal side affects. I'm looking at the gamma knife treatment because of the low side effects. By the way I dislike the effects of tegretol.  Some days I find myself only being able to concentrate for 15 minutes at the time. One day at my child's dr. appt. I couldn't remember her birthday. But without tegretol the pain would be unbearable. By the way I was pregnant while on it and she turned out with no birth effects and is bright and beautiful.

Name: Steve H.. 
Email: shodgso@hotmail.com 
City: Brisbane  
Country: Australia 
Diagnosis:: Trigeminal Neuralgia , Anesthesia Dolorosa
Treatments: MVD 

Story
I had a decompression operation in 1995 that was very successful in curing my pain, but it left me about 70% numb on the right side of my face.

Since then I have gradually developed a rosacea (reddening of the skin) on that side of my face. I would like to hear from anyone else who has experienced this side effect and how it was controlled.

Name:  Kathy
Diagnosis:  Trigeminal Neuralgia
Treatments:  Tegretol
Date:  9/27/99 

Story
It sounds really petty compared to the stories I've read but I have been on tegretol since the beginning and have been pretty much pain free.  Now, my liver is becoming affected and the doctor has reduced me to 200mg daily, having some aching and waiting for the big pain to hit.  I am very afraid. I read the stories and wonder if that is my future?  I am 51 and looking forward to enjoying my 2 little grandchildren...I am a fairly new grammie.  I dream at night about the pain hitting.  The attacks were very severe.  It took 3 months of treating me for other things before a P.A. diagnosed me.  I feel for each and every one out there with this horrible disease. I have no health insurance so I am on my own. What else can I try that might give the same results as tegretol but without the liver damage.  I am thankful for this outlet.  It's hard to explain this to anyone.

Name: Tony 
Diagnosis: Trigeminal Neuralgia 
City: Menai Bridge
Country: UK
Treatments: Carbamazepine, Amitriptyline
Date: 9/26/99

Story
ONSET OF TGN
My first experience of TGN (I notice some people abbreviate it as TN but I have got used to 'TGN' and will stick with it) was shortly after I had had several of my teeth crowned when I was aged about 51.

Part of the course of treatment was filling a root and also treating the same tooth for infection in the root by an apicectomy (going directly through the gum and bone to the bottom of the tooth). It was shortly after this treatment that I began to experience pain which seemed to come from deep in the jaw near to where the tooth was treated (lower jaw, left side, slightly nearer the front than the back of the jaw).

TGN 'CAUSED' BY DENTISTRY?

Knowing nothing about TGN, I naturally assumed that the pain was due to some damage caused by the dentistry - because the pain first appeared shortly after dental treatment and in the same area where the major treatment had been done.

One thing that reinforced this belief was the fact that the 'bursts' of pain seemed sometimes to be triggered by things like fresh orange juice - as if the juice were finding its way down to some part of the tooth or jaw where a nerve was exposed.

TGN seems to be associated with dentistry sufficiently often to justify research to establish whether there is a real connection and, if so, to find out exactly what the connection is. Saying that dentistry is 'merely' a 'trigger' for TGN (which is what we are often told) seems to me to be far too superficial.

GETTING A CORRECT DIAGNOSIS: GO TO A SPECIALIST HOSPITAL FOR TEACHING AND RESEARCH IN DENTISTRY

At the beginning, the pain was not too severe and it would disappear for months at a time. As seems to be normal with this condition, it got gradually worse until the 'bursts' of pain were bad enough to make me cry.

I did the usual round of dentists and one hospital specialist. It was clear that none of them knew what they were dealing with and could only suggest using toothpaste for sensitive teeth. I even had the tooth with the root filling extracted. As often seems to happen when people try to cure TGN by pulling teeth, the pain simply transferred itself to the teeth nearby.

I decided to travel further and go to a hospital for teaching and research in dentistry. This quickly led to a correct diagnosis. The specialist who examined me suspected immediately that I had TGN and suggested I take Carbamazepine (Tegretol) as a diagnostic test: if it relieved the pain then, almost certainly, the problem was TGN. Oddly enough, it was at about this time that my own dentist suggested that the problem might be due to TGN. Nevertheless, I would recommend to anyone with this kind of problem to *** get an opinion as soon as possible from a specialist in a hospital for research and teaching in dentistry ***.

TREATMENT WITH DRUGS

I was started on 100 mg of Carbamazepine each day, in 4 doses of 25 mg (after breakfast, after lunch, after supper at about 6 to 7 pm, and last thing before bed). This relieved the pain almost completely but it made me feel very uncomfortable and 'drugged'. I was not at all happy at the prospect of having to live like that for the rest of my life!

Within a few weeks or months, the 'drugged' feeling eased off and I began to feel normal. But, at the same time, the drug was losing its effectiveness in killing the pain.

To keep pace with the pain, the dosage was increased quite rapidly until I reached 800 mg per day (in 4 doses of 200 mg). This was a level which had been suggested as a maximum but I have learned later that the dose can be as much as 1600 mg per day.

Since the pain was not properly controlled at 800 mg per day, I was also taking pain killing drugs (mainly Co-dydramol but I did at one stage need to take Dihydrocodeine). Fortunately, at about this time, I saw an Australian doctor who was working for a short time with the other GPs in the practice that I attend. He suggested that I could use Amitriptyline together with the Carbamazepine. He prescribed 75 mg per day to be taken in 3 doses of 25 mg each. I take them after breakfast, after supper at about 6 to 7 pm and last thing before bed.

Although he said that this drug would take about 6 weeks to have an effect, I found that *** it relieved the pain very rapidly ***. I don't know why this happened. It may be because the Amitriptyline was being taken in conjunction with the Carbamazepine.

Despite the fact that I cannot now take alcohol (and I used to enjoy wine and beer in moderation), I feel relieved that I seem now to have a combination of drugs which keeps the pain at a level where it is low or absent. Certainly it is quite bearable. I have been taking this combination of drugs now for about 2 years and there has only been one or two occasions where I had to increase the dosage (of Carbamazepine to 1000 mg per day) and then only for a short time.

Note added 26th September 1999. It looks as if, after about 4 years, the effectiveness of the drugs is decreasing. I am now on 1000 mg of Carbamazepine per day to control the pain.

SIDE EFFECTS (THAT I KNOW ABOUT)

These drugs may cause me long-term harm but I have no evidence for that. Other things being equal, it would obviously be better if I did not have to take them.

However, there are side-effects that I know about:

Most of the time I feel 'normal' and not 'drugged'. But I do tend to get sleepy after lunch and sometimes in the evenings - more than I used to do. Normally, the caffeine in a cup of tea or coffee is enough to wake me up.

One of the effects of the drugs (mainly the Carbamazepine, I think) is a reaction in my skin. Initially, this was a red rash all over the front of my chest and stomach. This disappeared but then I got itchy bumps on my forearms that would bleed if I scratched them too much. Again, these have disappeared but the problem has now moved to my legs.

An odd feature of this itchiness in the skin is that, during the day, it is quite mild. Then, as soon as I get into bed, it suddenly gets worse - and it is not caused by bed bugs or fleas in the bed! The itchiness dies down and then I can get to sleep. Calamine lotion, applied to the skin, can be helpful.

TIPS

Here are two small ideas which may be helpful to anyone who has recently developed TGN:

AN OPERATION?

The present mode of treatment with drugs keeps the pain quite well controlled. Apart from the effect on my skin, not being able to drink, and possible risks of long-term side effects, I would be happy to stick with this regime pending something better.

But it seems likely that the drugs will eventually lose their effectiveness and I will need some other way of dealing with the pain.

I have been examined by a surgeon specializing in MVD, including an examination with MRI. He says he can see an artery in a position where it would be likely to cause TGN and he suggests that MVD would have a good chance of success in my case.

However, I have discovered from my research of the Internet and technical literature that the risk of death from this operation is between 0.2 and 0.7 %. The surgeon himself acknowledged a death rate of "about 0.5%". Apart from the risk of death, there is the additional risk of injury to one's hearing and in other ways.

The risk of death sounds low at first sight but it is in fact very much higher than one would accept from almost any other activity including notoriously dangerous activities like cave diving.

For this reason, I would like to avoid this operation or any operation with that level of risk unless all other alternatives have failed.

At present, I am in the process of gathering information about possible alternatives. What I have seen so far suggests that the Gamma Knife is much safer than MVD and seems to be as effective or nearly so. Tentatively, this is my preferred option at present.

Name: Chrystal  
Email: rohoo@Ixpnet.com 
Diagnosis: Atypical Facial Pain
Treatments: surgery, radiowave therapy 
Date: 9/26/99

Story
I first experienced this pain shortly after my daughter was born. The pain came on suddenly and I was lead to believe that it was my teeth, after going from dentist to doctors and back to dentists, I was told it was in my head. {no pun intended}. After several trips to the emergency room, a kind doctor finally made a guess at what he thought I had, Atypical trigeminal neuralgia. Great I had a diagnosis, boy was I wrong. I went to my first doctor's appointment with a doctor who was fairly confident he could treat me with medications. For a Year he repeatedly tried different meds, but to no avail. My husband and several family tried to get him to refer me to a neurologist which he refused to do. So for another six months my world slowly fell apart. I'm a mother of four whose children needed their mother back. The pain became all there was in my life and I ate pain medication like it was candy. When I wasn't in pain I was too drugged to be of any use to my beautiful children. I went from an active healthy mother and woman to someone who couldn't even get the dishes washed. It wasn't very long before depression set in. Finally after admitting defeat I was referred to the local university, where it was determined that I would have surgery. There was no guarantee since they could see nothing in the MRI and the lumbar puncture was negative for MS. Basically they were going in to explore and see if they could find the problem. Needless to say I was happy yet terrified the only time I have ever had to stay in the hospital was when I had my children, but the hope the pain would be gone was wonderful. I had surgery in January of this year. They found the blood vessel that was compressing my nerve and corrected it. The recovery period was long, and I Ended up back in the hospital twice due to dehydration and an infection in the incision. I was pain free for about six month's shortly after moving I was awaken one night with the shooting pain back in my face. I went back to Portland and received radio wave therapy, which left the right side of my face numb, hey better than the pain right, except I developed an inner ear infection and now I have small sharp pains back in my face. I have not been able to find a doctor yet who is willing to treat me, so I'm back to square one. If there is anyone out there who has any treatment suggestions or has had the same experience with doctor's who do not know how to treat this or are not familiar with it. I have not met anyone who also has atypical trigeminal neuralgia. I'm only 26 and need help understanding what this is and why it's happening.

Name: Kathy 
Email: saltyk9@mindspring.com
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol 
Date: 9/20/99

Story
My first attack came while I was working. My husband and I are painters. I went to the floor not knowing what was wrong. It was like someone pulled my top teeth out, or hit me in the face with a hammer. It happened 3 or 4 times. We packed up and went directly to a dentist, no problem with teeth he said as I had another attack in his chair. went to the dr. for 3 months. he treated me for ear infection, pain persisted. dr. said he never heard of such symptoms. finally his p.a. said she thought I was misdiagnosed, I had TN. She put me on tegretol, within a month of adjusting dosage to 600 mil a day I was painfree. Now 2 1/2 years later the tegretol has affected my liver, I am now taking 200 mil and am starting to feel an ache, knowing what will eventually come. I read these stories.  I know mine is not as severe as some but it's just as bad to me. I fear what is coming and I have nightmares the pain is near. I have no health insurance so my options are limited. My pain is located in the upper back section of my teeth on the right side comes like a knife and sometimes electric. I have read a lot about treatments other then meds but I am deathly afraid of giving them up, but I guess if my liver continues to have problems that decision my be forthcoming. I am only 51 and really fear my future. I can relate to all out there with this horrible disease.

Name: Natalie 
Willis, TX  USA 
Email: txips@yahoo.com  
Diagnosis: Glossopharyngeal Neuralgia, Atypical Facial Pain
Treatments: Neurontin 
Date: 9/11/99

Story
After 15 years of trying to ignore and forget the pain and pretend it would get better, I've finally accepted treatment with Neurontin. I have had a hard time functioning with the pain, but the meds make me want to find the nearest place to lay down. The intense pain from this recent bout has subsided a little and today is the first day of taking the Neurontin. I had to take Tegretol a couple of years ago for what I determined thru literature, was Unilateral Atypical Facial Neuralgia. The neurologist I saw had told me it was Trigeminal Neuralgia, but my pain was a constant dull ache and irritation on the left side only. Sometimes it would flare up and finally got so bad I had to take the Tegretol for about 3 months. It took another year are so before all the little pains went away. Now this time it is on the right side. I've complained for years to my doctor of terrible ear aches, only to be told there is nothing wrong. I've had CT scans that were normal, but that is the extent of the tests. The ear pain has spread and my whole jaw throbs and aches. This is probably some TMJ, although it extends to my eye and up to the top right side of my head. I'm on fire right now. My vision in the right eye blurs sometimes, it comes and goes. I've had 2 doses of the Neurontin so far and I know I will probably have to stay on it for awhile. I am very afraid of where this will go or if I have to live with it. I am fortunate in that I seem to have had minimal bouts with my pain compared to what I've read on line with others stories. God bless all of the ones that suffer with this and those who are trying to treat us. It is very difficult not to feel like a mental case or hypocondraic and all those other labels some male doctors put on us. I hate the neurotic woman one. My current doctor is really nice and at least tries to reassure me. He is just a primary care doc, and I know he is limited to family practice. I have refused referrals to the neurologist up until this point. I went to him 3 years back once or twice, but like I said, I wasn't satisfied with the TN diagnosis, I knew it was more. But the treatments are basically the same. I do have a wonderful chiropractor friend that I see as just maintenance care. But it all cost, and the expenses and my budget doesn't always allow me the extras. I could really babble on but I'll close. I would like to just wake up one morning feeling better than I did when I went to sleep.........Any encouragement would be greatly appreciated.

Name: Maria 
Email: maria_mc@bellsouth.net 
Diagnosis Trigeminal Neuralgia, Atypical Facial Pain
Date: 9/6/99

Name: Lisa 
Email: ktrsmom@aol.com 
Diagnosis: not yet diagnosed  
Date: 9/6/99

Story
I began having intermittent facial pain several years ago. Initially I went to my dentist, who performed pulp tests, took x-rays, etc.. He said I either had tic douloureux or shingles. Over the course of the past few years I have been plagued with episodes, which become more severe as time goes by. While talking to a close friend last week, I told her about my symptoms. She told me her husband had TN and that I should talk to him. I am convinced, though I have not been diagnosed, that this is what I have. The only difference in my symptoms is that my gums itch after an episode of pain. My pain is centered on a specific tooth on both sides, upper and lower. The pain shifts back and forth from side to side each episode. Pain radiates up the cheek, and along the jaw line. It is incapacitating. I have never felt such crushing pain in my life. I have become almost obsessed with trying to determine what sets off these episodes. There seems to be no common factor. My friend and I now are on a "mission" to try to find some natural alternative to Tegretol. I am 38 years old, working and trying to go to school. There has got to be a way to minimize pain without daily seizure meds. If anyone has had success with natural substances I would be very interested to hear about it.

Name: Harry 
Email: blancoh@saipan.com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Microvascular Decompression 
Comments: Pain Free After All!! 
Date: 9/6/99

Story
I am a male 36 years of age, and had this painful illness since I was 31 years old. At first, I thought it was a tooth problem but was later diagnosed as having TN. I was never this sick in my life until I had this painful feeling on my right jaw. Was in the Army and served during the Persian Gulf War and thought it had some correlation with the Persian Gulf Syndrome. The first medication I was prescribed was Tegretol, which worked for a couple of months until I was admitted in the hospital for allergic reaction. They then prescribed me with bactrin, Dilantin, perphynezine, and every other medication known to cure TN. Nothing worked!!! Finally, December 1998 I was referred to Queens Medical Center in Honolulu, Hawaii by physician here on Saipan, Pacific Islands, and was referred to Doctor Raymond Taniguchi. Dr. Taniguchi was shocked to know I have TN at this young in age, and told me that the youngest he ever operated was 50. I was the youngest ever since he had operated. Performed Microvascular Decompression for six (6) hours and now painless after successful operation. Would highly recommend Dr. Taniguchi... He is well known for this kind of operation here in the Pacific Region. I have been suffering for a very long time and nothing feels better than being your normal self.... Good luck and take care. God Bless..

Name: Pam 
Email: kc7ohy@earthlink.net
Diagnosis: Trigeminal Neuralgia 
Treatments: MVD in 1995 
Date: 9/5/99

Story
I've had TN since 1992. I had the MVD in 1995, in the recovery room I told my doctor that I was still feeling the pain, he said it was a sympathy pain and it would go way.... well it hasn't gone way yet and this is 4 years later. My pain currently radiates through my whole cheek and my nose area and around if off limits! I'm currently contemplating a second MVD or my doctor has also recommended Glycerol Injection. I'm just scared about the injection, I don't know much about the side effects. If anyone has experienced the Glycerol or Gamma Knife, I'd greatly appreciate any information.

Pam 
kc7ohy@earthlink.net
Bonney Lake, Washington

Name: Bret 
Email: bcarfizz@mindspring.com
Diagnosis:  Trigeminal Neuralgia 
Treatments: carbamazepine (Tegretol) 
Comments: pain location 
Date: 8/26/99

Story
My mother is 63 and is sick or had any health problems. she has been diagnosed with TN and was given Tegretol which helped for about 1 month. Her pain is not in her face but on the side of her head and on top. she's had all the tests and they ruled out everything but TN. She passed out last night and my father thinks her heart stopped after taking an increased dosage of the Tegretol. Her doctor had upped her dosage in a 3 day period. She is still very sick and has vowed never to take another one of those "cursed pills". That drug seems terribly dangerous to me and the increased dosage didn't touch her pain. she describes it as a dull constant ache which throbs when she bends down. After scouring this website for her, I don't see anyone else who has pain located where she does. I am interested in anyone who has similar pain in the same area, not the face. Please e-mail me.

Email: para10@juno.com 
Nickname: "G"
Diagnosis: Inferior alveolar nerve injury 
Treatments: Neurontin, Elavil, Klonopin, Darvocette 
Date: 8/24/99

Story
To anonymous 56 year old woman from 6/19/99 with Atypical Trigeminal Neuralgia/ Atypical Facial Pain/ Anesthesia Dolorosa/ Occipital Neuralgia diagnoses - and anyone else suffering with constant burning pain, paresthesia, hypesthesia, and electric-like feelings of the lower lip and chin, not to mention numb-yet-electric teeth and gums, as a result of injury to the inferior alveolar nerve (a branch of the trigeminal) after dental "treatment": Had I been told this kind of horror could be the result of a wisdom tooth extraction, that tooth would have stayed in! Various meds have been tried with little or no success. Am now on Neurontin, which knocks the edge off the pain and burning for an hour; side effects are I can't drive on it because my eyes "roam" and I also experience "speeding up" and "slowing down on the couch" episodes on it. All in all it's the only medication that's done anything and didn't knock me completely out. Radiofrequency lesioning of the trigeminal nerve to slow down the conductivity of the inferior alveolar nerve has been proposed but I'm scared of the lingual nerve (tongue) changes the doc said can occur, even though he said they only last 3-4 months. Nerve decompression surgery's also been suggested but the surgeon said there's a 20-30% chance of motor nerve damage, and permanent numbness. Any comments on these surgeries? Please e-mail me or post on this forum.

Name: Rosanne
Email: Brdlover@aol.com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol, Carbatrol 
Comments: Pain again 
Date: 8/22/99

Story
I had a sinus operation April'98, due to bad infection, right side worse then left. After a few months started to have severe pain on right side of face, many trips to ENT doctor, who in return sent me to dentist. Dentist says all is well with teeth but sees something in x-rays that has to do with the sinuses, back to ENT who is getting annoyed. He checks and says I now have a polyp on right side of nostril which he doesn't feel has anything to do with pain, he feels that I have TN go see a neurologist. See one who puts me on tegretol, thank God the pain goes away, what a relief. A few months passes the pain comes back full force and he changes me to my new medication, which has worked for the past 5 months I believe but pain is back again, increase the meds but that is not working now neither. I can't believe just to talk it triggers it, even if I walk at times when I put my left foot down it goes off. I thought I was the only person who has had this , no one you talk to can understand the pain you are going through, they think you are a little crazy. After reading everyone's story here I don't feel alone, I can now feel that some else feels what I am going through. I am trying to relax more because I feel that stress might bring it on too. I am waiting to see my new doctor next week and see what she would recommend and hope that the pain will stay calm until then. I hope that someday they will have a cure for this, no medication b/c I know I am tired of it. My neurologist told me that he would be taking me off of the medication as soon as the pain goes away, but from what I have read you never go off. I wish you all luck...

Name: GBates 
Email: cinnamon@flash.net 
Diagnosis: Trigeminal Neuralgia 
Treatments: allergic reaction to Dilantin and others 
Comments: What are the post-op effects of gamma knife treatment? 
Date: 8/17/99

Story
I am writing on behalf of my mother who at 79 yrs of age has suffered from this disease off and on for 15 years. The bouts have been somewhat infrequent until 2 months ago, only to return as the most severe ever and unrelenting. I learned of the various surgical methods and suggested the gamma knife as the most unobtrusive and safest for her age. She is concerned of post-operation facial numbness. Her neurologist doesn't seem to recommend this procedure. Any information concerning the after-effects of the gamma knife operation will be most appreciated. Thanks, GBates

Name: Shannon 
Email: blaylockh@juno.com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol 
Comments: I'm an RN that has been in denial until 2 recent attacks made a believer out of me. 
Date: 8/13/99

Story
I am a 44 year old RN and have recently been diagnosed with TN. My pain began a year ago after a tooth ache and development of what appeared to be a tunneling ulcer above a back tooth. Even though the dentist could not diagnose an abscess he did a root canal that lasted 4 hours. Afterwards, I continued to have pain. I was sent to a oral surgeon who did another root canal, he found an extra root, no relief. The specialist then did oral surgery and cut the nerves to the root. I obtained some relief even though I could always feel a dull pain above my right eyebrow, through my right eye, down my right cheekbone angling toward my right temple. The feeling compared to a milder form of eating something cold too fast. The pain has increased over the last 4 months to include tingling down the right side of my nose and I went to and ENT specialist and a Neurologist. After doing sinus x-rays, CT scan and an MRI I was diagnoses with TN. My symptoms are worsening at a rapid rate. I was in denial at first because my pain did not feel like an electrical shock but I have had 2 severe attacks in the last 2 weeks that have made a believer out of me. The pain felt like something was going to explode out of the right side of my face and roof of my mouth. The severe part of the attack lasted about 2-3 hours then subsided. I'm left drained. The attacks are debilitating. During the attack, I had to let spit run out of my mouth because I couldn't stand to move my mouth. I couldn't stand to even breath through my nose. I took 3 tylenol #3 but felt like I needed about 75-100 mg. of Demerol. I felt as if I needed to go to the emergency room but was in too much pain to move. I still have the lingering dull pain describe earlier but it's getting more intense. The problem is that when the attack wears off, I am left with the pain meds on board. I need a strong pain med that I can take during an attack that works fast but has a short half life or gets out of my system quickly so I can go on with my day. I would also like to find a good chat room so I can connect with others with this type of TN. I can't seem to get my family to help me research on the internet and if one more person tells me that what I have is caused by some kind of allergy or stress I am going to scream.

Name: Sophia
Email: Sophia903@AOL.Com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol 
Comments: I thought I was the only one on earth 
Date: 8/3/99

Story
Approx. 13 years ago, I got what I thought was the worse ear ache ever. I went to 4 hospital emergency rooms to be told that they could find nothing wrong. I was in so much pain that I felt that life was not worth it. After about 2 weeks the pain went away.

In l995, to my surprise, I again got what I thought was a very bad ear ache, tooth ache, jaw ache or something on the left side of my face. The pain felt like it was coming from my ear, but it was so bad until I could not really tell. I went to my medical doctor and was told that I did not have an ear infection but she would send me to a ENT Specialist. I was told by the ENT Specialist that there was nothing wrong. I returned to my Medical Doctor and she referred me to my Dentist. I was again told that there was nothing wrong with my teeth, and was referred back to my Medical Doctor who then suspected TN. by this time, I was calling into work, because the pain was so bad and I almost walked into a clear glass door because I was in so much pain. My Medical Doctor referred my to a Neurologist who scheduled a Cat Scan and MRI, both were negative. She at this time put me on Tegretol.

The medication works as long as I continue to take it but there are risk to your body, and I don't wont to take medicine for the rest of my life.

The Neurologist says that when the pain goes, discontinue the medication, but when I do and the pain comes back its like living HELL. The pain is always lurking quietly in my ears, it feels like a bomb always ready to explode.

I am tired of crying, screaming and being in pain. There must b e help somewhere.

Someone please stay in touch. Your experiences will help me survive.

Nickname: Kats S
Diagnosis: Trigeminal Neuralgia 
Treatments: anything to help : 
Date: 7/31/99

Story
 Hi. My name is Kat. In Feb/97 I got a tooth ache over the weekend. I went and saw my dentist on Monday. He took x-rays, etc. and said my teeth were in great shape. He called my new family doc (I had seen him once). Dr. B said to come straight over. He told me he thought he knew what was wrong but sent me to the only neurologist in town. This doc said I had TN. Of course I started on Amitriptyline, Tegretol and Lortab for pain. To this date I have seen 1 family doctor, 5 Neurologists, 2 Dentists, 1 Oral Surgeon, 2 chiropractors, 2 ENTs and 1 Acupuncturist. I have tried about 25 different meds and am currently on Amitriptyline(150 mg per day), Dilantin(500 mg per day), Clonazepam(.5 mg per day), and Lortab every four hours as needed for pain. With all the meds I have tried, most work for a short time. Some I am allergic to. Some of my docs are great and some are just blind to what is really going on with TN and me. There are two docs that have helped me a lot even when meds don't. Dr. B in Iowa is my family doc and without him and his support I wouldn't be here now. I also have to give credit to a Doctor I had at a university hospital. He was here on a fellowship from Spain. Dr. L, if you are out there: THANK YOU! I have read all the personal stories here and I do want to talk to many of you. So many of your stories have been made me feel like I am not alone. I do know what you are going through. So many of my symptoms are the same. The shooting pain, teeth, ears, you name it. I did have some downtime last summer and I thought that was the end. But here I am still at it. The pain is at one of it's worst time right now and I am trying to cope the best way I can. Sometimes that means screaming and crying, sometimes just sitting in a ball next to my bed and praying to God that he will make it go away. To all of you out there with THE CURSE, I wish you strength and hope. KAT

Anonymous
Nickname: jackie
Email: countryboy@accessatc.net 
Diagnosis:  Trigeminal Neuralgia
Treatments: various anti seizure drugs, microvascular decompression, numerous pain management clinics 
Date: 7/31/99

Story
Approximately five years ago I had a bicycle accident in which I was thrown over the handle bars onto my face. After this happened I started experiencing pain in my upper left jaw. My dentist decided I needed a root canal due to fact that I had several old large fillings on this side. A root canal was done with no relieve provided. A second root canal was performed on the next tooth (with no pain relief). I was in so much pain that I begged the dentist to pull the first tooth that received a root canal. He obliged me and put a bridge in. The pain only increased and with more frequency. My dental procedures took about a year and $4500. Since the procedures failed I was referred to an oral surgeon.

Oral surgeon procedures: He referred me to a specialist for TMJ. This doctor fitted me with two mouth pieces to wear alternately 24 hours a day. This did not alleviate the pain. Therefore, TMJ was ruled out. The oral surgeon then diagnosed me with Trigeminal Neuralgia. (this involved about 6 months of time and $2000) He referred me to a neurologist.

Neurologist: The neurologist did several MRI's to rule out all other possibilities. I went through a series of anti-seizure medications without a significant pain relief. I could not tolerate the many side effects of the medication. I was missing numerous days of work. My family was suffering along with me, due to the fact I was in constant pain and unable to do my daily functions. I was then referred to a pain clinic.

Pain Clinic: He put lidocaine on five long q-tips and inserted them into my nostrils. This was supposed to numb the nerve. (ha! ha!) Desperate people take desperate measures. On my next visit he tried to deaden the nerve with a medication inserted by needle behind my ear to the nerve. (unsuccessful)

During this time I received a sinus cat scan. It came back ok,

Back to the neurologist: He decided to pass me on to a neuro-surgeon in his office.

Neuro-surgeon: He performed a microvascular decompression. I was very sick for about 4 weeks after the surgery. When I went back for the 6 week checkup I seemed to be feeling better. I still had some pain, but the doctor told me to give it time. Over the passage of time (by now I've lost track of time and money-both are of no importance any more) the pain returns with a vengeance. In search of relief I visit another pain clinic. He starts with injections. He then moves on to tegretol. No relief is provided. I stay away from doctors for about a year. I then return to my neuro-surgeon. He starts me on tegretol again. I build up to 1000 milligrams a day. The pain seems to ease but I can't function. I to back to 600 milligrams a day. The pain does not disappear but it is tolerable. I decide to use my family doctor to receive my tegretol.

Family Doctor: Over a period of time the effectiveness of 600 milligrams of tegretol is not adequate. I increase my dosage. I feel like a zombie most of the time. I have short term memory lost so bad that I can not remember phone numbers, addresses, etc. Since I work in a office, memory is very important. The doctor changed my medication to celexa. I have been on celexa for two months. The results are not favorable. Little pain relief and no sleep.

I received another sinus cat scan. The results showed that I have severe chronic sinusitis. This has been a reoccurrence throughout two years. This brings on additional pain. Currently in limbo with this problem.

Last week we got a computer. It took me a week and many nights to find this web sight. It was the first time I read about other people with this kind of pain. I have been crying the whole time I typed. I have always felt that I was in a world alone. No one can understand the pain and agony you live in unless you have been there. Since my pain started I have tried continuous measures to make my life stress free. I was office manager of a company. The stress was too much to cope with along with the pain. I stepped down to a general office position. The stress was still too much. After 8 years with my company I made the decision to go to work in a slower paced environment. I find that stress tends to cause frequency and intensity in my pain. It amazes me that I have gone to such lengths to find relieve from this monster that has a hold on me. At times I have considered taking bottles of medicine to stop hurting for good. I have also been in such intense pain that I begged the dentist to pull all my teeth. Thank goodness he has been patient and supportive in helping thru my time of need. It has been the support of my husband, dentist, children, and the Lord that has keep me alive.

In summary: My goal is to research other alternative medicines, surgeries, etc. I am searching for the day when I can feel normal again.

Gosh it felt good to finally talk to someone that I feel can understand. Thanks and Good Luck!!!!!!!!!!!!!!!

Name: Jennifer 
Email: jenncot2@aol.com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol 
Date: 7/30/99

Story
After a viral infection w/ a fever of 104 I developed what I thought was a toothache. During the night the right side of my face swelled up and I lost all muscle control on the right side. The pain was excruciating. My dr. thought it was a secondary infection and treated it w/ massive antibiotics for 3 weeks w/ no relief couldn't eat and the antibiotics made me so sick I lost 15 lbs. First they thought it was an abscessed tooth, then an abscess in my sinuses. I had a scope done of my sinuses, and it showed nothing. After seeing 6 different dr's, and all of them telling me they had no idea what was wrong with me I finally went to see a neurologist who diagnosed me just from reading my chart. He started me on Tegretol and after 10 days I started hallucinating. He is wary of trying Dilantin b/c I am too young he says (28). The facial swelling I can live with, the loss of muscle control I can handle, it is the pain that is making me crazy. I had a management job at an HMO I had to give up b/c I have more bad days than good. My 2 young children are afraid of me because of the swelling. I don't know what I am looking for here, I guess just to know that someone else understands what this is like.

Story
When I first started to have symptoms of facial pain and pain in my jaw. I was told there was nothing wrong with me but I could Have allergies or TMJ. After a few years, all my teeth were being pulled out because the pain in my jaw was blamed on my teeth. Now I do not have any of my own teeth, I have a full set of dentures. Next I was told it was my parotid gland and tested for it, and the test was negative. Meanwhile, the doctor told me, maybe I should see a psychiatrist, because the pain was all in my head. Well I knew that it was not all in my head it was in my jaw. The I went to a neurologist, who said the pain was from my jaw line and started physical therapy for TMJ. After I stopped physical therapy, a few months later my face was paralyzed on my left side of my face. My new primary care doctor sent me to another neurologist. I then had a MRI and a benign brain tumor showed in the MRI. At once O was sent neurosurgeon. who told me that I had Trigeminal Neuralgia but because of my age many doctors do not recognize trigeminal neuralgia. I was operate and doctor performed MVD, I was pain free for 3 weeks. The doctor's then tried another surgery, Gamma Knife that was not successful also. Then I was to another neurosurgeon whose specialty was Spinal Cord Stimulator, this was implanted in Feb. 1999, I am pain free only when I have the Spinal Cord Stimulator on. This has been the longest I have been pain free and I am not taking any medication.

Email: Jawlablue@aol.com
Diagnosis:   Trigeminal Neuralgia
Treatments: Dilantin & naproxen
Comments: have worked for some time now
Date: 7/28/99

Story
I have had TN on both sides of my face for nine years. I was told that this is
rare. Chronic pain is very debilitating illness. Dilantin and Naproxen have kept me pain free for some time.

Anonymous
Diagnosis: Trigeminal Neuralgia
Treatments:  MVD, Gamma Knife, Spinal Cord Stimulator
Date:  7/28/99

Story
I have trigeminal neuralgia, I have suffered with this many years and many miss diagnoses from many doctors. I was finally diagnosed last year. In May of 1998 I had MVD, in which I was pain free for one month. June of 1998 I had Gamma Knife procedure, in which I had no results. During this time I was on many different medication, which help reduce some of the pain. In February of 1999 I had another surgery, spinal cord stimulator to results the pain was reduced. I need to have the spinal cord stimulator on so I am pain free. I was very lucky to have this procedure done and the results because I was told there was only a 50 percent chance this would work.

Name: Lee 
Email: leejcaroll@aol.com
Date: 7/2/99

Additional Information / Update - 8/26/99
I have had 11 neurosurgeries including experimental, alternative therapies, hypnosis, acupuncture, dental assessment, been tried on over 100 drugs, separately and in tandem. My story is obviously long but if anyone is interested in my experience with MVD, rhizolysis, tractotomy, dorsal column stimulator implants, tegretol, Dilantin, etc, and so on, I refer you to the MGH Guestbook on facial pain and trigeminal neuralgia. In addition there are many stories there that supply additional information and experiences to those that are available on this site.

Story
I am glad to hear that many people have had success with the MVD and performed by a famous neurosurgeon.  However, my MVD performed by him resulted in a permanent partial facial paralysis after he "promised" me my "face would not be injured' (Those are direct quotes.) To my knowledge he has not added to his textbooks the fact that a partial (initially it was 100% and took over 15 years to get some movement back.) permanent disfigurement can occur. In addition when this case went to the Supreme Court of Pa (1991) The Judges said, "His testimony at deposition was DIFFERENT FROM AND INCONSISTENT WITH" his testimony at trial (He ultimately settled the suit.) I went to a support group in Pa. and was called a "Liar" by one of the leaders and "interrogated" by another (she agreed with that word) about the suit. and was , after attending faithfully for a few months, strongly given the impression I was not welcome any longer. This was because of the litigation against this neurosurgeon and, apparently also related to the disfigurement. Each time, whether I said anything or not, the sight of my paralysis was a constant reminder of the havoc this neurosurgeon can cause. The group leaders, in particular, seemed more concerned that nothing bad be said about the neurosurgeon than they were about a member who needed support . At no point did I say anything negative about this neurosurgeon, simply that others needed to know that paralysis of the face, absent injury to the 8th (auditory) nerve is a known risk of the procedure and one, in my experience, that this neurosurgeon did not disclose, I write this letter to make you aware that you need to do research on your own regarding risks as, at least in my experience, if the surgeon is this particular neurosurgeon  ( Although it may also occur with other surgeons) these risks are not clearly disclosed.

Thank you. leejcarroll@aol.com

Name: Reinald 
Email: rnielsen@nemaine.com
Date: 6/27/99

Story
Wife Nancy has had apparently typical onset of trigeminal neuralgia with attacks first occurring months apart increasing frequency to weekly and now several times a day. The left side of her face is affected.

Monday, she had excruciating pain for almost three hours when in desperation she applied Canyon Group's "Megapain Therapy" (MT) which she had used for successful abatement of muscle pain associated with a broken arm.

Instant relief!

She applied it left of her nose between mouth and eye. Even before she completed the application, pain was subsiding.

My limited review of Net references turned up no mention of topical treatments for TN. Has any other substance been used similarly?

MT is a marketed by Canyon Group Corporation of Liverpool, Texas.

Reinald rnielsen@nemaine.com

Name: Sue 
Email: scowell@xs4all.nl 
Diagnosis:  unknown
Treatments: acupuncture 
Date: 7/24/99

Story
I would like to write my story here to give some kind of hope to the letters I have read here today. I suffered about 5 years ago with the most extreme facial/tooth/temple pain. I was ill altogether for about 6 months. Lying in the dark, unable to take light, noise or eat, talk - do anything really. I was diagnosed with everything from stress and neuralgia to a brain tumor. I felt like I had a sword in either temple twisting and stabbing constantly 24 hours a day. I had shooting pains from my top back teeth which made it feel like they were plugged into the mains. I couldn't bear to touch the roof of my mouth let alone touch the teeth, without feeling the most excruciating pain. I could trace my pain from the teeth, up in a vertical line and then going off at right angles to my temples (where the sword twisted!). In short I was verging on suicidal. The week before any of this had started, I had been to my dentist (a new dentist) who had said I had a mouth full of very old amalgam fillings and that he wanted to remove all of them that year and replace them all as they were time-bombs waiting to explode into infections. We didn't get that far as the next day I had a raging infected lower back tooth. Two months later (and 3 infected root canal treatments later), I was in constant pain. The doctors treated me like a zebra. Jaw surgeon for the lower half, ENT surgeon for the middle bit and Neurologist for the top bit! Many (mis) diagnosis later, it was decided I had a brain tumor that was pressing on my facial nerves and causing the pain. I left the doctors surgery (without getting any scans, and telling him he was wrong as it started in my teeth - not my head) and went back to my dentist. I told him what had been diagnosed and he said more or less 'rubbish'! I was desperate. I ended up having all my amalgam fillings removed. The AMALGAM is my opinion was the root of ALL my problems. Nobody would help me here as all the doctors said it had not been scientifically proven and therefore didn't unfortunately actually exist for them (and if they did have a suspicion that this was the root of my problem, none of them were willing to stick their neck out and help me). I ended up choosing to ditch the 'specialist circus' and treat myself with acupuncture. Within six weeks I was off the heavy painkillers, sleeping tablets and valium and 80 percent pain free. He put me on a strict diet of no coffee, alcohol, chocolate, dairy or sugar. It took the next year of slowly regaining my strength and gently living in a way that would reduce the pains (which had this point limited itself to the sight of origin i.e. my teeth and thereabouts). I still have the odd dull ache or sharp throb in one tooth or another when I am tired, have a cold or am stressed. It has left me with 5 percent pain to the 100 percent I suffered for six horrendous months. I sympathize with each and every one of you as I understand how debilitating this is. I think my situation was most definitely caused by the mercury leaking from my old filling and literally rotting the nerves leading from those teeth and causing painful inflammation. This, at the same time, poisoning my whole system and making it unable to cope with any kind of infection or pain. I am well and healthy now (not one trace of amalgam in my mouth) and wish the same for all sufferers of this condition.

Anonymous 
Nickname: Cindy 
Diagnosis:  I don't know 
Treatments:  
Date: 7/20/99

Story
Whenever my resistance is low from an illness or general fatigue or stress I get neuralgia on one side of my head or the other in the vicinity of the top of my ear. The pain feels like lightning, a ZZZZINNNNG of pain so sharp that I feel nauseous and my face registers a cringe. Within a few hours of onset, the top edge of my ear is red and feels hot to the touch. The zinging pain occurs once every five minutes and each zing lasts a second or two. I typically take an over the counter analgesic to take the "edge" off the pain but nothing takes the pain away. By the second day, the pain seems to travel down to my ear lobe which becomes itchy and develops a pimple. Once the pimple pops, the pain is gone. I feel like there is SOMETHING causing the pain that needs to find a way out and once it does, it's gone. I'm often tempted to lance a little hole in my ear just to allow the THING a way out. WHAT IS THIS?

Name: Carol 
Email: nycerak@aol.com 
Nickname: nycerak 
Diagnosis: Trigeminal Neuralgia 
Treatments:  
Date: 7/19/99

Story
I've had TN since October, 1998. Since then, I have been on various medications that done nothing but make me ill. My doctor recommended surgery by a specialist in Chicago, and I was assured that I was doing the right thing by agreeing to surgery. Last Monday I went in for the surgery that involved a needle. The TN that was on the right side of my nose is gone, however, the surgery left me in chronic pain and numbness. I have absolutely no feeling from the top of my head, on my right side down to my forehead, right eye, down the right side of my nose and under my eye. From then on, I cannot feel the right side of my mouth but I can feel my lower cheek, however, I feel pain in my right jaw and ear that most often inflicts severe pain. My ear throbs with pain and I can barely eat because of the pain in my jaw. I feel constant pain deep inside of my right eye socket. I had NO idea that this would happen and I was not prepared for this to happen. I hope that all of you that are contemplating surgery read this and think carefully before you say OK.

Name: Lynn 
Email: lynntaylor@apexmail.com 
Diagnosis TN: Trigeminal Neuralgia  
Treatments: Tegretol  
Date: 7/15/99

Story
I was diagnosed with TN after an injection at the dentist's about 6 years ago; correction - I realized what it was and told my GP the diagnosis, with which he agreed!

I had to have time away from work because one cannot think, walk, drive or anything when the spasms start. Perhaps I was lucky, but the pain, which is searing, came every 15 minutes or so, giving me some respite and a chance to accomplish tasks without screaming.

He put me on Tegretol and a few weeks later, the pain went - never to return, although I do find it's always there in the background as something I never want to live through again. I was told that it is not true neuralgia and that no-one knows the cause of this dreadful pain. As one of your other victims said, no-one can see the pain and they cannot understand what all the fuss is about.

I had Bell's Palsy as a child, concurrently with otitis media,(full recovery), both on the left side and in last 10 years have had herpes simplex, oddly, on my right wrist! I am convinced there is a connection somewhere. If you look at the Bell's Palsy site, there is a definite link with herpes.

During the bout of TN, I had to make a documentary for TV and was able to function during the interview by asking the technicians to stop filming until the pain had passed. I suspect they thought I was completely mad, but during the pain-free episodes, I functioned normally - well, as normally as I ever do!

Name: Cindy
Email: cindy.roeder@towneair.com 
Diagnosis Trigeminal Neuralgia  
Treatments: None at this time 
Comments: It's very painful and makes you practically an invalid. 
Date: 7/14/99

Story
I had my first pains at age 33. I thought it was from driving in the mountains or from swimming. I went to doctors to see about my ears and about my teeth. My tongue would go completely numb, and the pain was excruciating both in my gums, in my ear, my jaw, and up the back side of my head. I was then diagnosed with Trigeminal Neuralgia. I tried Tegretol, but it made me crazy as if I was psychotic. I tried Dilantin and had a reaction where I went completely numb as if to be paralyzed. I ended up taking 12 Advil a day for about 6 months which seemed to give me relief for about 1 hour out of every 6 hours. Currently, I don't have pain too often, at age 41. But it does come now and then, and I pop the Advil right away for the pain, it relaxed the muscles right away. If it ever gets to the point it used to be, I'm sure I'll have to consider surgery.

Name: Cynthia 
Email: ceetn@AOL
 or WECEJE@AOL 
Diagnosis Trigeminal Neuralgia  
Treatments: MVD, Glycerol Injection, Gamma Knife, Severing the TN at the root 
Comments: Bilateral TN 
Date: 7/12/99

Story
After reading over the medical and surgical treatments for trigeminal neuralgia, I feel I would be remiss if I did not share these facts with you. I am 44yrs of age with bilateral TN. I developed TN when I was 28 yrs of age. I have a wonderful physician whom has been my neurosurgeon for 14 yrs. Over these past years, I have had much success with Dilantin, which you barely mention. On one side I have had wonderful success with a glycerol injection into the gasserian ganglion ( no numbness, no pain for the past 4 1/2 years.) In 1997, after two MVD's over 10 yrs, I had the nerve severed, as it exits the brainstem, with no pain and no anesthesia dolorosa. I believe those in pain need to know there is hope for them. The above procedures offer that. The surgeon's skill often makes the difference in what the patient is offered. If they do not have success with a certain procedure, they will abandon it and give only his failed results to a patient. When a patient does not read anything positive on these web pages about a treatment, and his neurosurgeon is not skilled in that treatment, the patient is usually offered only what that surgeon may do. If you are going to take the time to produce this web site, for others to learn, then you owe it to the patient suffering to present them with all their choices, even if a particular neurosurgeon does not perform them. Thank you,

Cynthia Ezell TNA Board of Directors Support Group Leader - Jacksonville, FL

Name: Patty 
Email: Primer3@aol.com 
Diagnosis: Trigeminal Neuralgia 
Treatments: Tegretol 
Date: 7/12/99

Story
My pain started in my right temple and eye in 1987. I was 27 years old. I went to the Dr. and was told I had a Sinus infection. After receiving medication for it, the pain returned the next month. I went back and forth to Doctors and Neurologist for 4 years. They all said I was having Migraines, or I was depressed, or whatever they could think of. It was effecting my life completely. I quit my job and laid around all day. I found my pain was only in the winter months, (Sept. - April or May). If I had to go out, I would wrap my head with a scarf. Finally I went to a Neurologist that discovered I had TN. He put me on Tegretol and it worked the first winter. Then it seemed in order to get enough in my system to work, the side effects were too much. I decided that the only choice I had was to move South. Drastic as it seems, I would have done anything!!!! We sold our house, packed up everything we had, took our son out of his school and headed out. I've been in Florida for 5 years, almost pain free. I have more energy now than ever and my family can actually tolerate me now. I feel it a little if we get a day that would be cold and the wind blows. I can deal with that!! I'm not sure if the weather effects all people with TN, but if it does, the move is really the best thing for you. Thanks for letting me tell my story. I was so happy to see I was not alone. And I also must say thank you to my husband, who stood by me through all of this. This affects the whole family so much. To all that suffer from this. I know there are times when you want to quit. There is hope and I'm sure glad I didn't go through with what I wanted to do at times. Keep the faith, something will work.

Anonymous:
Nickname: Skeeter 
Diagnosis: Trigeminal Neuralgia 
Treatments: tegretol, Surgery, Neurontin 
Comments: relief for 2 1/2 years after surgery; back last week 
Date: 7/7/99

Story
I began having facial pain in mid 1995. I thought it was a tooth problem and I might need a root canal or something so I went to my dentist. That began an almost 2 year search through medical ignorance, greed and bureaucracy. My dentist sent me to a TMJ specialist who gave me steroid shots into my gums and relaxation techniques at an ungodly rate and milked my insurance for as long as he could. He totally ignored my begging him to help me or refer me to someone who could because I was suffering more than I could bear and the pain was becoming more frequent and intense. After 4 months of weekly visits, he finally referred me to a neurologist who diagnosed me with trigeminal neuralgia and began to prescribe tegretol. That gave me some relief but the pain never disappeared completely. After about six months, he added Neurontin to the tegretol as well as something to help my stomach adjust to the medication. I was lethargic and tired and depressed all the time. My pain began to have a burning sensation and some of the episodes would last for 3 or 4 minutes without respite and I was having as many as 15 to 20 episodes each hour. By the time I could no longer live with the pain I was taking 25 pills a day and living in almost constant pain. The neurologist said I would have to remain on a medicinal regime for at least 6 more months before he would recommend me for surgery. (I had found the surgery option on the Internet and was begging him for a referral to a surgeon). He was well aware of the extremity of my pain. By this point I couldn't talk to him. I has to write notes and use a sign language of sorts because talking triggered the pain. I was living on soft liquids and baby food. I honestly believe that he hated to lose me as a patient because my insurance coverage was excellent, they paid almost everything and questioned nothing. Praise God for that, if I had had to pay for all my treatment out of pocket, I would have had to live (or die) with the pain. Finally my chiropractor, of all people, found a surgeon at a convention and through conversation with him arranged a consultation for me. Within 2 weeks I had the surgery and was completely pain free! This was the miracle I had prayed for. It was like I had never had the problem, no numbness, no twinges of pain. Until last week. After 2 1/2 years of respite, it's back. I am floored. The surgeon told me I should never have to worry unless it turned up on the other side of my face in years to come. But it is the same side and the frequency and intensity of the pain are more fast paced than the first time. I'm consulting with a local neurologist in 3 weeks, (the closest appointment I could get.) The last time I went to Atlanta for surgery. The surgeon who preformed my procedure is on vacation for a year. Meantime my regular doctor has me on Neurontin. 

Prayers and advice are welcome. I'm tired, I'm scared and I don't think I have what it takes to go through this again.

Anonymous 
Nickname: Val~
Diagnosis:  Unknown 
Treatments: Capsaicin cream! yes!!!!!!! 
Comments:  My Face burns!
Date: 7/7/99

Story
Hello everyone, Hopefully my story will help some folks out there, I have suffered from facial burning sensation for over a year now, many different doctors, allergists, and all my blood test were normal. I read about the capsaicin treatment and well I tried it! It worked! My face has been so hot for so long! It would burn like some fire and brimstone biblical curse!

Of course being me..I have a garden full of everything I needed to make my own cream including some fresh aloe vera! I think my version came out much stronger than over the counter! I won't list my recipe since a lot of folks are sue crazy nowdays, so see your doctor get the $$$ prescription kind , it may work for you too! I know it sounds insane putting a cream on your face that is derived from hot peppers, but somehow it gets very, very, hot for a few hours then as the hotness of the cream goes away it takes that cursed skin burning sensation along with it! I have not felt this great in over a year now. I cant wait till tonight to use my 3rd treatment before bedtime. One word of warning, don't rub this cream into your eyes or nose or mouth, it is very hot! My facial burning has been tied to lingual damage in dental work, allergies to my beloved dog, and I also have neck c-4 damage.

Email: jawlablue@aol.com 
Diagnosis Trigeminal Neuralgia  
Treatments: Cleveland Clinic Foundation 
Comments: There is Hope 
Date: 7/5/99

Story
I have had TN for seven years. The onset of my condition took me thru six doctors. I finally went to the CCF Pain Management. The meds which I currently take, have caused me to be pain FREE. I take the following meds: Dilantin (300mg one day and 200 mg the next) and Naproxen (550 tib). I am mostly pain-free, but I do experience break through pain once per day. I feel I manage my pain well at this point. I had been pain-free for about four years by taking 200 mg Dilantin & 550mg Naproxen tib. Has anyone else used this regime of meds? 

Please write Jawlablue@aol.com

Name: Kathleen 
Email: KCMT@aol.com 
Diagnosis: Trigeminal Neuralgia.  Possible MS 
Treatments: Baclofen, Tegretol, Celebrex, Amitriptyline, Methadone Comments: Still hanging in there 
Date: 7/3/99

Story
I was diagnosed with TN sometime around last Christmas. I had always thought it was Sinuses, or teeth or Migraines. I have had a couple of teeth pulled (perfectly good teeth I might add!). Previous attacks only lasted 24 hours or so and then would go into a "no pain at all mode" for awhile. The attack last Christmas lasted almost a week and I thought I would die. Took all of my Migraine meds along with all the sinus stuff I could get my hands on and got absolutely no relief. Finally went to see an Internist in the new town I had moved to in Montana. He dx'd the TN right away and put me on Tegretol and a ton of Codeine. Turned out I am allergic to Codeine so became like a demented person. Falling down, forgetful, unable to drive or work. Very frightening. Now several months later I have had a MRI, a trip to a very uncaring Neurologist in Butte and a visit with a very compassionate caring Neuro Surgeon also in Butte. It is difficult living in Rural Montana due to lack of access to nearby doctors. I have  just lived through the latest attack by taking large doses of Methadone, Tegretol, Baclofen and anti depressants. Most of the last five days I have spent crying and puking! Guess I just don't do pain meds well! I know this is a hell of a diet if you want to lose weight. I am going back to the doctor on next Tuesday and am gonna get serious about the surgical options. Am not willing to do anything except the Microvascular Decompression as the others I have studied do not have very good results over the long term. I would consider having the nerve cut and removed if this would work. I don't care about being numb, but I expect I will not be able to tolerate this level of pain for much longer. I am a retired Police Sergeant from Tucson, working as a Private Investigator and Victims Advocate here in Montana. I need my brain intact and am not willing to be pharmaceutically disabled at the age of 47. My husband tries really hard to understand and says if "stoic" wife is crying then something is terribly wrong. I do not think I can get the surgery in Montana. But I have heard of a Doc. in Tucson, Doctor Thomas Norton who has had considerable experience with this surgery and success with it. 

Would like to hear from others who have had the MVD surgery and others who may have MS as a complicating factor. 

Good luck and God Bless you all. KC

Name: Sharon 
Email: Sharbudc@aol.com
Diagnosis:  Atypical Facial Pain
Treatments: Nortriptyline
Comments: It works for me.
Date: 6/29/99

Story
About 6 years ago I had to have retina surgery and a scleral buckle was put on my left eye. Then I had to have the buckle removed from my eye. The surgery went fine and I thought that was the end of that - but no! About 3 months later I started having electrical shooting pains around my eye. My eyelashes felt like they had stingers attached to each lash. This lasted about 3 months and after going to 4 doctors was diagnosed with atypical face pain and put on nortriptyline. It has saved my sanity. I feel a little drawing or pulling around my eye at times and I have days that my eye will not let me put on makeup - I start to get little zingers, so I don't wear makeup. After becoming educated on this illness, I feel very lucky to have the pain relief that I have received.

Anonymous:
Nickname: Hopeful
Diagnosis:  Trigeminal Neuralgia
Treatments: MVD, tegretol
Date: 6/29/99

Story
I was also about 20 years old and started experiencing the telltale signs of trigeminal neuralgia. They thought it was my wisdom teeth and removed them. Then they thought it was my sinuses and removed a polyp and widened my septum. Each time I had relief, but that was only the TN in a refractory period. When I was 25 I was officially diagnosed thanks to a neurologist Dr. Kenneth Nakano in Hawaii. He put me on Tegretol and I would again go into another period of relief. But sure enough, they always came back. You never know when, or what part of your life it will take away. At age 31 I had Microvascular decompression surgery. I was not informed that it could come back. I was pain free for 3 1/2 years and then the old familiar pain was back again. Not only was this physically devastating, but emotionally. I went back on the Tegretol and was pain free over two years when it came back again. I've been in the medical profession for 20 years, and I am appalled at the insensitivity and ignorance to this condition. People don't see something physically wrong, they don't see your pain. I have also felt like a criminal requesting pain medication or entering an emergency room requesting a shot because I just couldn't ride this episode through. Especially when it happens every day. It takes an emotional and physical toll. A local pharmacist has told me about some kind of cream that he can make up with a Rx from my physician. It has Ketamine and other things that penetrate the skin transdermally. It is applied once an attack begins. Is anyone else familiar with this treatment? I am only 39 and it is very discouraging to know I have to go through this the rest of my life. I am looking forward to trying this cream. Thank you for having this forum available to share with others.

Anonymous:
Nickname:  Tony
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Date: 6/25/99

Story
Approximately 11 years ago, I developed what a Neurosurgeon says is a combination of Glossopharyngeal/Trigeminal neuralgia with Cluster Headaches (He called it Hyperactive Dysfunction Syndrome.)  The odds given me for surgery to correct this are slim. I had surgery to remove a parotid tumor and that seemingly was the beginning, although there may also be genetic factor. At first the pain was occasional, but as the years have progressed so has this pain-filled, dreadful disease.

My diagnosis was recent (approx. 2 months ago.) My search has spanned at least 10 years. I have no idea why it took so long to be sent to a Neurologist, as I was sent to many ENT specialists.

I saw a Neurologist approximately 1 year ago. He said my symptoms were Atypical TN but never mentioned GN. My pain feels like someone is stabbing a knife deep into my ear drum, accompanied by irregular heartbeat, and burning acid taste. When the pain is under-medicated as it had been for so many years the following additional symptoms occur: cluster headaches 2 to 3 per week, numbness down the left arm and leg, surface neuralgia across neck shoulders and back.

The first neurologist gave me Tegretol and then Neurontin (3,600 mg. per day). I felt like the walking dead, with the dosage this high and still I had bleed through pain. When I developed a very serious allergic reaction to the drug, he chuckled and was upset that my G.P. had taken me off of the drug. The reaction or shall I say it's aftermath has only added to an already intolerable condition.

I also have fluid filled blisters (they burn and itch, scab over and last about 4 to 6 weeks) they seem to appear of their own accord, in both ears, stomach, face and chest. I am not sure if it has to do with the GN/TN or if it is just a lasting symptom of the drug reaction. All herpes tests come back negative.

Now unable to take seizure drugs, I am trying the a time released narcotic with Vicodan for bleed through pain. It has given me my life back. It took approx. 2 months for the pain to come under control, or should I say back to just the stabbing in the ear. Letting the pain get so horribly out of control was causing many other symptoms.

I'd be interested to know if anyone else developed this from a facial surgery, or if the genetic connection is possible. The natural remedies I have tried have all offered some relief, they are: acupuncture, kava, drinking fresh carrot juice daily.

Anonymous
Diagnosis: Trigeminal Neuralgia
Date: 6/24/99

Story
This is response to the Anonymous email re: tooth pain with TN and YES I am experiencing tooth pain, so much so that today I was considering having a consultation w/ my dentist to check my xrays to BE SURE there isn't a root problem in my mouth, or that my wisdom teeth don't need to come out. The reason I am on this site today is to see if anyone else diagnosed w/ TN is experiencing pain in their teeth and related jaw area along w/ numbness in that part of the jaw. I am borrowing my friend's access to America Online so you cannot respond to me, but I wanted to let you know that I had the very same question.

Anonymous
email: msq@carol.net
Diagnosis:  Meningioma located in the area of Meckel's Cave
Date: 6/24/99

Story
I had surgery 11/95 for  what was said to have "significantly distorted the 5th cranial nerve and slightly displaced the 7-8 complex as well". I now have right facial paralysis, numbness, and severe facial discomfort and pain. My right eye was sewn together for 15 months, and was opened at my request. When I eat, my right eye and right nostril waters. This has been referred to as "crocodile tears". I have tried Neurontin and at first felt like maybe it helped a little, but eventually could not tell a difference. I tried Tegretol but had a reaction to it and was only on it for about a week. Since my surgery I have suffered from depression, fatigue, insomnia, along with the facial discomfort. It is a vicious circle. My right cheek is sometimes really red and hot to the touch. My tongue feels like it has been burned with hot coffee on the right side, and the roof of my mouth and gums feel the same. Sometimes there is a feeling of a hypodermic needle sticking in my gum and going up beside my nose. The facial discomfort includes tightness, cramping, shock-like sensations, heaviness, tired feeling, aching, feeling like my cheek area is enlarged and "sticking out" from the rest of my face, throbbing of my right eye, dry right eye that waters (figure that one out), right nostril sometimes feels like it collapses and I cannot breath through it, constant ringing of ears, occasional ache in right ear. Sometimes I get a terrible headache that starts at the back of my head at the incision site and aches through the roof of my mouth and into the right eye. This particular one puts me out of commission, requiring medication and sleep, and is brought on by any strenuous activity or simply going all day without rest. I don't know from one hour to the next how I am going to be feeling, so I cannot make long-range plans. I no longer enjoy vacations, shopping trips, eating out (I drink with a straw and have a hard time chewing due to the facial paralysis, and my eye opens and closes involuntarily when I chew) and cannot be as active and do things I used to do. And family and friends do not understand. To them you look fine, and they simply cannot grasp, or do not take you serious, when you try to tell them the intensity of the discomfort. I also have a problem with short term memory, and people will say, "Oh, I do that", but it is not the same.

Dealing with this 24 hours a day is so draining emotionally and physically that there is hardly anything left for ANYTHING or ANYONE else. I go for periods of time and think "I can deal with this", and try to stay active and pretend everything is ok, and then I finally become exhausted and "give into" the pain and have a pity party, which I hate. It is then I find myself searching again for help, and that is how I happened upon this page.

I had never before heard of anesthesia dolorosa, and it has not been mentioned to me by my doctors, but the symptoms describe me perfectly. My neurologist just refers to it as trigeminal neuralgia-like symptoms due to cranial nerve damage from the tumor and surgery. My neurosurgeon acted like he had never heard of anyone having symptoms like I have, and acted surprised, telling me he expected complete recovery. Boy, was he wrong. I could go on and on, but have taken up too much room already, but if anyone has any of these symptoms and any information that could help me such as medications you have tried, doctors who have experience in treating these symptoms, or just a word of encouragement, please email me. I would be most grateful. This is a wonderful site.

Anonymous
Diagnosis:  Atypical Trigeminal Neuralgia, Atypical Facial Pain, Anesthesia Dolorosa, Occipital Neuralgia
Date: 6/19/99
Story
Two and a half years ago,  during dental implant surgery, the 3rd branch of the trigeminal nerve housed in the mandibular canal, the inferior alveolar nerve was severed by the dental drill. I have classic paresthesia with chronic burning pain, heightened by any stress level that feel as if I burned myself, electrical shock impulses though my lower lip because the nerve is looking for the other side. All meds have been ineffective. I have had acupuncture without success. Elavil gave me Rosacea, that skin rash; Neurontin at 900 mgs. made me very sick. My treating pain specialist has told me 1) there is no place for me as far as atmosphere because the weather/air effects my face; 2) no injections; 3) no surgery; 3) there is really nothing I can do for myself except change the way I think, practice yoga and/or meditate which is hard to do; 6) developed occasional migraine headaches and 7) pain behind the eye on the injured side. I don't have the typical TN shock at the temple area -- have had them on occasion over this period of time so I do know what it feels like but there is a constant dull ache through all 3 branches of the Trigeminal Nerve. I have TMJ and feel muscular spasms down through my neck and shoulder. Cannot eat or drink hot/cold w/o experiencing tightness in the face. I may try Zostrix cream as a final resort. Unfortunately, I am in a somewhat different category because of the severed nerve as opposed to injured by compression or other trauma.

 I'm female, 56 and had a great life but I am learning to live with this pain because I have no choice. Acceptance of my fate has been long coming and that has helped me to a degree. There sure are a lot of folks with TN and some if it has been caused by dental work. Having attended a seminar at a famous NYC hospital on TN, it came to be known how many of US went to the dentist! All your stories are classic. Keep searching the web, also foreign sites for answers. Also learned, many people with face lifts experience atypical facial pain. Makes you stop and think what's really going on! I have learned much, education is key and keep searching.

Anonymous
Diagnosis: TN, ATN
Date: 6/19/99
Story
I once communicated over the e-mail with someone who had TN since they were 20. They are now 50. I couldn't help thinking that I didn't think I could endure 30 years of pain. I have been diagnosed w/ATN for 3 years.

Mine began like many others. I had a toothache, or that is what the dentist thought but couldn't find the source, When we decided to do a root canal, he inserted one instrument and I jumped from the chair. "This is no tooth" he said. From there it was off to the neurologist to rule out MS. The neurologist said I was too young to have TN (Tell that to my 20 year old friend) so I was just an oddity. Well I was still living. TN doesn't kill you but it makes you wish you were dead sometimes. My husband would follow me around the house in the middle of the night because he was worried that I might put my head through a window, just to feel any other kind of feeling. It sounds morbid I suppose but for a long time I felt that way. I have run the gamut of most medications. Currently the hit parade includes baclofen, Dilantin, Neurontin and Ultram. Sometimes they all work very well. Sometimes not. Most of the time I feel like I could sleep a couple of hundred years. My short term memory is terrible. Sometimes my balance is affected.

Perhaps the most difficult is that TN is not something people see. I look fine to them. They simply don't make the connection that there is a true physical problem They don't relate to something that is intangible to them and there is nothing (nothing!) to compare with the pain of TN.

I am looking into surgical options now. I have met with one neurosurgeon who recommends MVD. I am now looking for a second opinion.

Anonymous:
Diagnosis: Trigeminal Neuralgia
Date: 6/17/99

Story
I never heard of TGN before, but after experiencing about 8 excruciating attacks over the weekend, I went to the hospital ER where they diagnosed it. This was based on a CT-scan and visual exam.

I did not get any medication from the hospital, but was told to see my family physician who would then most likely refer me to a neurologist who would put me on Tegretol. Before seeing my GP two days later, I got on the web and found this site among others. After reading all I could, I had no doubt that the diagnosis was correct. The symptoms matched just what everyone was describing.

When I saw my GP, he noticed I had a significant wax build up in my ear and a sinus infection - all on the same (left) side as the TGN pain. He took an x-ray and sinus sample which later turned out to be staph and something else I don't remember. He said I did not have TGN, so he washed out the ear and gave me a prescription for an antibiotic and a decongestant.

I must say I was very doubtful that this would work, but it has now been a month and I have not had another attack. This is truly amazing, because I had been getting about 3 or 4 a day up to my visit to the GP.

I still think I have TGN, and suspect that some day it will reoccur. Perhaps the wax and sinus infection was what was triggering it. My reasons for posting this story is to encourage anyone to be sure to look for either of these two possible causes before going into a Tegretol treatment. Who knows, it may work for you too.

Anonymous
Diagnosis:   Suspects glossopharyngeal neuralgia but dr. not sure
Date: 6/13/99

Story
My husband had what seemed to be an attack of motion sickness over 3 years ago. He was transported to the hospital by ambulance and has never fully recovered since then. Some weeks after this attach he had a sudden increase in his blood pressure. High enough that he was put under a heart specialist care. told he would be on blood pressure medicine the rest of his life at age 47. Six weeks later it dropped so low he had to stop all medication. Also had high pulse. His eyes would go through stages of extreme redness one eyes at a time. almost like something is traveling though his head. A sensitive feeling on the left side of his skull and a feeling of flu like symptoms always is with him. Almost like his head eyes and inside his head don't move in sequence. he has been to 23 drs. and no one has helped him.

I would also like to add that his blood pressure is now 90 over 59 or there about. It has in recent weeks taken a sudden decline. We are lost as to what needs to be done. No one can help us and we don't know where to turn. He is not active on most days and in his face this illness has taken its toll. Please Help!

Name: JULIUS  
Email: 10937
EL PASO TX
Diagnosis: TN, ATN, ATFP
Date: 6/8/99

Story
I have suffered now 3yrs with TN AND I AM SIMPLY TIRED AND ON THE VERGE OF GIVING ON LIFE. SURGERY WAS DONE IN 98, AFTER 2 MONTHS, IT WAS BACK, I TOOK ALL KINDS OF MEDICINES, BUT ALL IT DID WAS DRAG ME IN BECOMING THIS USELESS PERSON. I WAS FINISHING GRAD SCHOOL, I HAD TO QUIT, COULD NOT FUNCTION, CANNOT EAT, TALK, OR WORK OR EVEN SOCIALIZE. TN CONTROLS MY LIFE. PLEASE DO SOMETHING.

Anonymous
Diagnosis: TN
Date: 6/8/99