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TRUE STORIES Please note that treatments vary greatly depending on the individual. Do not base your treatment decisions solely on the personal stories you read here. Please keep in mind that the following comments do not represent a scientifically adequate cross-section of patients . Information here may be skewed and faulty, but on the other hand it is the closest thing at the moment to "the voice of the people"....As you read these stories, you might want to contact someone who has asked to remain anonymous or has requested their email address to be private. 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: Brian Henderson I have had AD for since 1988. I have not been able to find any meds that relieve the intense numbness and tingling sensations. The entire right side of my face has been affected. I have no pain, but I would really like to find something that would lessen the numbness. Does anyone have this same problem and if so, what have you done to get relief. I welcome any replys. Name: Denise I'm still seeing my doctor and have already seen the dentist this is like a wild goose chase. I am now trying biaxin and claritin d to rule out sinuses and have had an x-ray of my sinuses. The pain is so sharp it starts at my nose and pierces to my head. Does this sound familiarto anyone? I can't eat right talk right or touch my face in any way. I go back to the doctor in twelve days then I go for a cat scan. He said this face pain could be trigeminal neuralgia what a scary term. I don't know how it starated I just know I am under alot of stress does this make it worsse? Please try to help me I'm disgusted about right now . Name: Amy I was diagnosed with Trigeminal Neuralgia about 3 months ago, I am a 23 year old female. The pain started in April of 2001 and after seeing 2 dentists, an endodontist, and 2 neurologists, I have a name for this pain. It seemed to start for no aparent reason, and since I had a root canal done the year before, I simply thought it was that gone bad. They did every tooth test possible and determined it was not in my teeth, and suggested I see a neurologist. So I did, and he did all kinds of pin, eye, reflex, etc tests, ordered an MRI to rule out tumors and devided it was "facial" neuralgia and gave me tegretol. This seemed to kick the pain but low and behold, about a month into the medication, I broke out in a miserable full body rash....in the heat of the summer. Needless to say I had to give up the tegretol and I moved on to Dilantin. I do not recommend this for anyone, it was like taking candy. It did nothing for me, and it also threw off my birth control pills as if I wasnt even taking them, so I had to switch those to a stronger pill, and eventually stopped the dilantin due to a horrible trip to the ER. The pain was so bad I was up all night vommiting and nearly tearing my hair out because of the pain. The ER gave me an IV of some kind of pain medicine, which was not nearly strong enough to kick this pain. I was there for about 6-8 hours and was released with a Rx for Darvocet and a slip to see a neurologist. I have tried Vicatin, Darvocet, and Perkocet...nothing helped. They only made me tired, and the pain was too bad to sleep. So this second neurologist that I saw was EXCELLENT. He saw me quckly and started me on Neurontin which doesnt effect my BC pill and seems to be the best choice so far. Although I still have pain every now and then, it is bearable. This doctor is located at Ruby Hospital in Morgantown, WV at West Virginia University. I hope this story helps someone or at least gives someone hope of relief. Feel free to contact me anytime. Name: Ray In Army a long ago ,had upper right wisdom tooth was swollen and in pain went thu my training and got station over seas perment .So I go to Dentist he looked to be a few years older than me (18)after the 3rd shoot it was still to painful so 2 more and I could feel nothing but my left ear as he dug and pulled,and know joke half way in the chair with me ,he findly said I got no follow up no nothing and at 18 I still should have at lest try to get someone else to check it out.Cause that even are next day I could hold nose tight and blow and air would hit my tonge.That is the Gods turth.Every sence then even to I cannot breath threw my nose.But guess what I was in a explosion and for 10 years the VA cannot find my medical records (Loss) for a claim I have and need those records.Is it a way a cat or MRI can show this happen like with scare tissue are some other way. Thank and e-mail me please if someone knows more about this are has had it happen to them Ray2Vet@aol.com Name: clarence Hello, I have had postings here before. I have changed e-mails for anybody who has tried to reach me. I still have great success with nerve blocks. And willing to share my information. Get in touch at my new adress pastperformerca@hotmail.com. Like to hear from my old contacts. Lost alll my e-mails when hard drive crashed. Name: Maria Diagnosed with Occitipal Nerve Headaches sometime in August of 2001. After an unnerving bout of vertigo - headache lasted for 8 weeks. Had first nerve block - ouch!! Second nerve block was even worse than the first - ouchhhhhhhh!!! I am doing all I can not to have a third one. Have survived on Darvocet which does nothing for me and also have tried oral steroids which also do nothing. Mostly, I guess I just grin and bear it. I feel sorry for anyone who has to go through having the occipital nerve block on a weekly basis. I just believe my TN made me tougher and more willing to try to ignore the pain but you will always wonder if maybe there is something more than you know wrong with you........... Occipital nerve headaches are awful. God Bless Us Suffers and give us the strength to cope with everyday life....... Name: Maria I was diagnosed with Atypical TN in October 2000 after 6 months of continuous facial pain at the age of 33. My internist was 99% sure that was what I had so he sent me to a Neurologist after my third visit to him. (It took me from March to September to convince myself it was something more than just a sinus problem.) Had MRI and Neuro. diagnosed Atypical TN. He put me on Tegretol chewables - 5 100mg tablets -- made me so sick - and Prozac. Prozac has helped me with anxiety of dealing with this disease. Neurologist finally changed my meds to Carbatrol extend tabs and nausea went away - Thank GOD!!! I have now increased my dosage of Neurotin and have slowly decreased the dosage of Carbatrol after a year of living in pain - a pain that never fully goes away. I was tired of not having a life and missing out on my children's lives. The pain is still there but feels different now - more like a hot, stinging numbness. That's liveable - at least as long as the 'lightning strikes' aren't happening. I have discovered I cannot do everything like I used to and that I have to listen to my body. Slowing down has been the hardest for me. I've had to give up a lot of my church activities and other various activities in the community. Pain has become my way of life - but it varies from day to day and sometimes minute by minute but I'll survive. God will not put on me anymore than I can bear. One day the pain will be gone and I will be so thankful!!! Not every person will have the same symptoms or the same reaction to this disease and doctors don't know everything. If you are not happy with the care you receive - find someone else who can help you. Research the disease and e-mail other people who have the same disease you do. Good luck to all of us...... Name: TONYA Today I went to see a neurosurgen who told me that I didn't have typical tn. Maybe it wasn't tn at all. I was diagnosed by my 2nd neurologist about 4 months ago. I don't have short episodes, they last for hours on end, almost daily. I reached the maximum dose of trileptal with ultram for break through pain. She began to back off the trileptal and start neurontin. I also take darvocet for break through pain now. At this present time I am at the absolute highest dosage of neurontin and still haven't stopped taking trileptal. She refered me to the surgeon because there aren't any more meds to give. I'm 28 and fear what the rest of my life will be like, if there isn't anything they can do. My MRIs are normal so of course there CAN"T BE ANYTHING WRONG WITH ME!!!! The surgeon today actually asked me if I thought my sinuses might still be infected! Give me a break, I can't believe I going to have to pay this man. Does anyone else have pain on both sides? My left side pain started about 3 months after right side pain began. I started my meds shortly after left side began to hurt. I still have break through on that side, just not as strong. My pain triggers migrains, I wonder if anyone else has that same problem. It is so sad to know that there are so many doctors out there that treat this disease like a joke. Right now I just want to scream. No one should have to suffer like this, I wish they would take the time to understand. Name: Patty I'm looking more for help or someone to talk to than have a story to tell. I have suffered facial pain for over 5 years on the left side of my face. Finally after many Dentists, ENT, and neurologists, I found a neurosurgeon at Northwestern in Chicago to help me. I hated taking the tegratol due to side effects and chose the MVD procedure last June. I was pain free until last week. What we thought would relieve me for years to come only lasted 6 months. I have a dull aching pain in my left ear eye and jaw at all times, followed buy a sharp pain that comes and goes with no warning. I have a wonderful husband and family but to someone who has not experienced the pain and horror of TN they just don't understand. I need someone to talk with so I know I am not crazy. I am 32 years old and have to small children to raise, which on many days is difficult. Most people just treat me as if I have a headache and that is just not the case. Thanks for the chance to talk, please email me if your outthere! Name: deborah callaghan My story, well where do you begin. I'm now just turned 36 and recovering from Micro Vasular Decompression. And after 5 years of on and off TN I am seeing light at the end of the tunnel. The last 12 months have now looking back been a total blare. Where do you find the words to describe this terrible disease,I sit here sometimes and wonder, still I find it very hard.I would love to hear from anyone iut thee that is a sufferer of TN Name: Name: margrit I'm 63 yrs old and started with TN approx. age 28. Had many tests, CT scans, etc. Went from ENT doctor, allergist, neurologist with no definite dx for approx 15 yrs. Had history of "fever blisters" when in sun or windy, cold weather. Had severe attack of fever blister, pain in left side of face and went to dermatologist. He told me to take L-Lysine which helped after a few days - relieved the pain and fever blister cleared up. Since then (for about 20 yrs I take L-Lysine at the beginning of each November because this is my worst time of year (Nov to March) - Have had teeth removed (molars) - lost 3 last year and realize that most of the medications don't help. I try to stay calm because stress, sun, cold wind and also, especially, TALKING ON THE PHONE aggravate problem. Started with my 2001 attack 3 days ago and hope that this year won't be too bad, however, this time I'm having trouble with my balance (walking gingerly). Funny, but 5 days ago I mentioned to a co-worker that I had no headache for two days straight - I felt very relaxed and full of energy and then WHAM, the ear pain, teeth pain, head pain, eye pain all started. Sort of the calm before the storm, I guess. If it only lasts a few months, I'll just take Lysine - if it gets worse I'll consider surgery. Hang in there everyone because in view of the fact I've had this for a very long time (over 30 yrs) I've lead a reasonably good life - just wish I could have those first 10 years back so that I could have enjoyed raising my daughter instead of spending a lot of time in a dark, quiet bedroom because doctors had no idea what was wrong with me. As usual, they said it was my nerves - the old cop-out when doctors can't figure out what's wrong with you. I've held full time job for over 40 yrs in spite of the pain, vertigo, etc so I guess it could be worse. Just have to know when to back off and take care of yourself (rest, etc.) if this is what helps. Name: DANA HI MY NAME IS DANA I AM A 31 YEAR OLD FEMALE WITH A HUSBAND AND TWO CHILDREN. I HAVE BEEN DIAGNOSED WITH TRIGEMINAL NEURALGIA ABOUT NINE MONTHS AGO. I I HAVE BEEN IN SO MUCH PAIN AND SOMETIMES I FEEL LIKE I AM GOING CRAZY. IT SEEMS LIKE I CANT GET THE RIGHT DOCTOR I HAVE BEEN THROUGH TWO NEUROLIGST DOCTORS AND I AM STILL SUFERING. IT SEEMS LIKE ALL THEY WANT TO DO IS UP THE DOSAGE OF MY MEDS. THE STATE I LIVE IN WE HAVE NO NEURALGIA SPECIALIST. IF ANY ONE KNOWS WHERE THEY THINK I CAN GET SOME HELP PLEASE LET ME KNOW. I DONT KNOW IF SURGERY IS THE RIGHT WAY OR NOT. AND I WAS WONDERING IF THIS COULD CAUSE ME TO HAVE REALLY SEVER HEADACHS IHAVE BEEN HAVING BAD HEADACHS. PLEASE LET ME KNOW I FEEL SO HELPLESS. CAUSE ME TO HAVE TO GO TO THE EMERGENCIE Name: Joyce Pain on left side of face, temple and jaw. Seems to be responding to medication. Neurologist currently trying to determine if 8th cranial nerve has damage. Had MVD surgery on right side of face last January (5th & 7th nerve), and was very successful. Have had some hearing loss - experiencing vertigo and nausea on occasion. Had pain on left side before had surgery for hemifacial spasm on right side. Has anyone else had similar problems? Name: Zoe I had dental surgery 10 years ago. I recently had removed the tooth that had been saved. It was very badly abcessed and I was no longer able to control the pain, The extraction itself caused no pain but I had to return to have the site cleaned 3 days later as the pain had not decreased. As soon as I left the dentist I was in excruciating pain and have remained so on and off for the last three months. I saw a specialist that diagnosed it as being atypical facial pain but now believe it to be more consistent with atypical trigeminal neuralgia. I live in outback Queensland and our one local doctor refuses me any pain relief. Another doctor I saw in Brisbane insists it is an infection and has just prescribed an eighth course of anti biotics. Is thereanyone out there that can help me. I am in intolerable pain and quite despairing of my situation. Please help if you have any information that my help. I am 37 years old and would like some quality of life back. Oh, I am unable to find a neurologist that will treat me until next year. Help! Name: Rick T 3 years ago My bottom left molar nerve died so my dentist removed the nerve. a proceedure I have had before.However when he reamed out the nerve it became painfully obvious that the pain relief had not effected this nerve. AFter many doctors visits I have still got no answers until a family friend told me of neualgia so i looked online and I found this site. My symptons include; left side scalp irratation, pins and needles on left side of fAce, left jaw pain in behind jaw and down neck, sore throat. and left side head aches. I rarely go a day with out pain all day. I had the tooth removed to no avail Alcohol sets off pain in a few minutes I ve tried Imagren, Caramazepine no effect Voltaren works the best on me but I try not to take it every day. Name: Gina Dilipkumar I have been experiencing facial pain for 7 years now. Tegretol was helped me until last year. But this year it doesn't work at all. My neursurgeon suggested me to take Neurontin. It seems like not working at all, except it makes me very sleepy. I have to come work everyday so i stopped taking this tablet. This pain affects my work, and my everyday life. i try to get through but it's so hard. The hardest thing is i can't express my feelings to anyone. I cried too. One minute i am top of the world, the next minute the pain is on top of me.I almost lost to suicide so people need to realise how painful this condition can really be, we've lived ti and it is not an easy thing. I prey to god everyday , because i don't know where else to turn. Name: Jane Suffering with AFP for a little over 2 years. On 16 th doc (neurologist #5). Current treatment had me feeling better than I was 6 months ago. Was taken off the Ultram for fear of seizures. I was taking about 4-6 per day. Always 2 at a time because I realized I am immune to it somewhat. It still took the edge off the pain and allowed me to work and have a life. Now that I am off of it, I feel the same old pain coming on again. Just called the doc who will not refill the Ultram, but has me increasing the muscle relaxors a lot (z-z-z-z-z-) and inceasing the anti- inflammatory (oruvai) by 2x. I go to sleep lately with the ice bag. I remember what this pain is like when it gets really bad. I start to get nervous at the thought of this monster returning full force. I'm upset that we seemed to have it under control and now he changed the meds!!!! He can't see me for another month. I' ve had panic attacks in the past when the pain is high. He knows this, but won't prescribe anything else. I still work, and have to. I just bought a house and hope I can get through the moving process at the end of the month. Does anyone have any suggestions on other pain meds. (preferably no- narcotic) that have given any relief? Have done most of the otc ones + motrin 800 with no help. Thanks in advance.... Jane Name: Rennie I had an attack over a year ago. I thought I was going crazy. I called my dentist, and I knocked myself out that night with a friend's oxycontin. The next morning, my dentist took x rays, and he said nothing was wrong with my tooth. Incidentally, the pain was coming from a place where I had a bridge. I had had the tooth pulled several years ago, with a terrible root canal, then the bridge. I also had hurt my neck, bulging discs on the right side, which is exactly where my pain is. I had oral surgery, and the surgeon mentioned "neuralgia". I went home and looked in a medical book and diagnosed myself. I went to an idiot of a neurologist, who prescribed Tegretol and Elevil, but never told me what I had. I did not take the drugs, until my next few attacks. By then, I went to my primary care phsyician, who dx me with TN. I first tried the Tegretol, but it caused unusual bruising. However, it worked to control the pain. I was worried about my liver. Then we tried Dilantin,which did not work at all. All the time I was taking Dilaudid for the pain. I took the TNA newsletter to my neurologist, with the newest info about Trileptal. However, I began having very, very high blood pressure, tachachardia, and edema. He is worried. So am I. I go to my primary tomorrow for a blood pressure check. However, my friend also took Elavil, and it caused the high blood pressure and rapid heartrate too.So, I am titrating off the Elavil starting tonight, and hopefully the side effects will subside. I have to be careful when I brush my teeth, laugh, and get stressed. I am a licensed psychotherapist, and I work with foster kids, so it is hard not to get stressed out.I am taking 900 mg of Trileptal, TID. I would like to hear of others taking this drug. My bloodwork came back just fine, thank God. However, my neurologist is thinking I might be having side effect because I also take synthroid. I am really convinced that it is the elavil that is causing the 180/120 blood pressure. Pretty scary for a woman who works out five days a week, and eats well. Would really like to hear from someone who is currently taking Trileptal. Thanks alot for letting me vent. I feel so damn alone out here. Nobody knows about this thing. We definately need to educate dentists. Thanks, HRM1012 Name: Earl While in the military years ago, I went to dentist with a pain in the left jaw. One tooth was extracted. Needless to say the pain never stopped and other teeth were taken. The pain was so intense that I could not sleep or eat. I lost alot of weight & became very depressed. I spent many long painful hours by myself. The military dentist never understood and thought me insane. Suddenly the pain stopped and I continued on with my military carrer. I was stationed in California and the pain started again. I went to the base medical facility and they gave me a few pain pills and sent me away. When I returned with the pain, I was scolded and dentist & doctors treated me as if I were insane again. Even though the pain was sometime beyond my tolerance, I never returned for treatment. I will never forget those hours that I cried in the dark and the days that I could not sleep or ear. Finally the pain subsided enough that I could survive, but somehow I felt different and kept to myself. My biggest fear was that the pain would return. I continued to remember the sleepless nights and the times that I wanted to eat and could not. I use to watch people joyfully chew their food and wish I cound do that. Well off to Vietnam I went. After about 6 months the pain started in the left side of the face. They sent me to a dentist. He was most frustrated and would glare at me in the dental chair. I was ridiculed by others. Why was I in the hospital? I was not wounded. Surely, I just wanted to go home or must be crazy. Finally, I got our of the hospital...I still had a lot of pain. The doctors refused to give me any pain medication and let me lay in the ward. F I went back to work only to have the pain return. They decided to send me back to the states. Before leaving, one of the doctors came by my bed and said, "I guess you are satified, You are going home?" I was devastated. They flew me back to a Hospital in Texas. To my horror, I was placed under the care of a dentist. He leveled my teeth and took bite imprints while I suffered in pain. Most of the nurses thought that I was crazy. They gave me liquid food because it was too painful to chew. I tried to explain that even to drink was painful. A dentist decided to give me an injection into the left side of the face...right in the joint. I never screamed so much in my entire life. Next day, the nurse handed me a mirror. The jaw and face had dropped, I looked like something from a horror movie. Sometimes later they had me push my bed over to Neuosurgey and I finally spoke to a doctor who knew what was wrong. They had no idea whether the face would be right again and were about to discharge me. I had serve in the military for 15 years. This doctor finally gave me what I needed an anticonvulsant. In four days the pain was gone. I could eat a hamburger in pulic. I Finally had surgery a RadioFrequency. It took care of most of the pain. My face and eyes burn and I am pain free on the left side other that burning in the center of the face and eyes. Needless to say...the freedom from pain was short lived. I now have pain in the right side of the face with burning in the eyes and left forehead. I am taking Carbamazepine 100 mg 4 time aday with little results. I have lost my job, can't sleep again. It is the same pain like I had in the left side of my face. I had the pain in the left side of my face for 5-6 years before surgery. I have had the pain in the left side for two years. I did retire from the military. I survive because of the pension. Will it never end!
Name: phil Just a short. Line Well after finding this web page I finally knew that I was human, and not an alien from outer space, (well that’s what about 9 doctors thought) im the lucky one iv’had this for about 18 mths now, and reading some of the sites about TN can be scary. My pain only happens when pressure is applied to my forehead and the lightning pian goes down the side of my neack, even the pillow hurts. And the towel and the wind and the brushing of hair all the things we take for granted are soon taken away from us by a stupid thing called TN and replaced these things with pian (not fare is it people)???????Well I saw a neurologist a few weeks ago and im going for a MRI this Friday hope they find some thing but on the other hand I hope they don’t………. Well sorry to bore you with my little story. But yes im a chicken. GOOD SITE PEOPLE KEEP IT UP And sympathy for every one with this shit of life. PHIL (the chicken)
Name: Bernadine I suffer from Trigeminal Neuralgia and glossopharyngeal Neuralgia. This happened after a car accient two years ago. Right from the word go I tried to tell Doctors what was happening to me I had excruciating pain on the right side of my head and I would get these stabbing pain as if someone was putting a knife into your head and face and neck and just kept stabbing. the pain holts me in my step where I can't move if I try to step I jsut get the stabbing so I try not to move , my right eye waters when this happens, I get a chocking affect and I lose my voice sometime for just a little while and sometimes it can be gone all day. The pain in my right eye really hurts and my eye begins to close , I'm not very good with anything that is too chewy as I start to schock and lose my voice and it triggers the pain in my neck and behind my ear. I went to different doctors and was told that the things that where happening to me just couln't happen. I had one Doctor he wa a Neurosurgen(who was a pig of a man)told me that I wouldn't know what pain was, I showed him a photo of myself that my daughter had taken I night when my face was dropped on the right side and my eye closing and I was just wanted to cut the whole right side of my face off it was driving me crazy,anyway when he saw the photo he just said Oh you look like your in pain there and that was all. It has really annoyed me in the fact just because people can't see the pain they really don't beleive you. My children have learnt not to depend on me as some days I really can't do anything. things like just stirring a mixture can trigger pain in my neck and head and the next minute I have no voice; trying to hang out the washing causes pain where I can't move, and I really hate the wind I am so pleased that I live in Queensland and that we don't have a lot of winter and once summer is really here there's not too much wind. I have totally lost faith in Doctors and their attitude. I've tried quite a few different medications and also nerve burning I can't really say whether the nerve buring helped very much at all I started to get complete body spasms after I had that done where I would be lying in bed and my whole boy would just jerk. I f I try to talk when I have lost my voice to a whisper I become really light headed as I am trying to push out the words. All of this has really infered with my life ( as anyone out there all ready knows this themselves). I use to work with special needs children whom I absoulely love to work with, teaching them and doing occupational therapy with them and now that has all stopped. After the accident when I went back to work I ended up working only for two hours a day; and this was so hard sometimes I would be sitting with a child and I would have to say I can't move or I would signal that I couldn't talk and the children would be just wonderful they would either race and get another the Learning Support Teacher or get me a pillow needless to say I had to end up stopping - you can't really teach when you can't talk. Typing this is hurting. It's affected my Social life (once again as you all well know) you try to act normal and you end up paying for it. I really have to stop now but I like to talk to anybody. Name: arnold I began with TN approx 87, got desperate in 90 and underwent MVD. Never pain free there aftere but some improvement, in 92 a glyxcerol injection and in 95 Gamm knife. I was not very well informed and was searching for the non-existant "magic bullet". But what did I know. It seems to me surgery only servers to further antagonize the nerves and the injured nerves react in ways that can not be predicticted. Dr. Ernest Mattherws of Mass Gen Has, a surgeon yet, convinced me to exhaust chemical means. One problem I would like to talk about is how TN interfers with ones ability to earn a living or maintain a practice ( I have the good fortune of earning my living with my mouth, speaking, winning others to my way of thinking, I am an attorney) anyone need a lawyer that can't speak? The medical problem of TN is vicious and crippling but it also interfers with earning a living, which simply adds to the stress which then may bring on another attck. Suggestions anyone ? How does one cope with not being able to earn a living or worse, watch a practice slowly vanish due to the inability to speak? Name: Cathy I was diagnosed with TN about 1993, it took almost a year of various drugs, which all made me to tired to work, and several tests, which all of you have had, before they the doctor decided I probaby had TN. In July of 1994 I had the MVD surgery, and I have had great success until now, about 3 to 4 months ago, I started experiencing pain again. I have been to the neurologist and he has prescribe Neurotin, but it makes me very sleeply. I have been really discouraged to think that I may have to go through all this again. I don't think I could stand that surgery again. It took me a while to get back to normal. It has been a great 7 years without pain. I kept telling my self that this could'nt possibly be back, but the doctor confimed that TN was probably where this jabbing pain was coming from. Has anyone else out there had this come back after so long?
Name: Patty My father's story starts about a year ago and has been a long excrutiating painful journey for him and my mother. My dad was 72 when all of his problems started. It began with pain radiating down the side of his head and face and upon touch you could send him into a convulsion-type state. This would absolutely scare my father and all of us to death, we could not imagine what was going on other than maybe mini-strokes or something of this sort. We took him to our local hospital which admitted him for testing that went on for about 5 days and they were just completely baffled by his case. I watched as this hospital more or less used my poor father as their own little guinea pig because of their failure to diagnose what he had. They would come into his room and run their finger down the side of his head just to watch these little convulsions and be fascinated by them and him not wanting them to do it again because it scared him so bad and was so painful. They finally sent him home--undiagnosed and put him on a regimine of about 15 different medications --everything from heart problem medication to high blood pressure medicine along with seizure medications. I sat back and watched this big, energetic strong, vibrant outdoorsman loving man go down to a man who sat indoors, lifeless, scared, and deeply depressed because he felt as though life was over. This man was so healthy, he never spent a day in a doctor's office or hospital in almost 30 years. They has told him that he had also had a stroke at this time and he was afraid to leave his home or even be alone. I did get to see this draw he and my mother closer than ever as all theses things took place. They have been together for 50 years and I'm just now seeing them holding hands while they walk together as they were being sent from different doctors and hospitals. They kept telling him that they needed to get his blood pressure down first before they could help him--what a joke! Finally, after almost a year ago, the pain got so bad on October 13, 2001 he was almost begging for help so he once again went back to the emergency room and all they did was blood tests with negative results and sent him home. At this point, my father could not drink, eat, or even stand to go on. On the night of October 14, 2001, my father could not sleep with so much pain and woke my mother to tell her that he was just going to do what my uncle "Bud" had did a few years back. This was to commit suicide! My mother cried as she told me this over the phone. The next day we took him to the emergency room at a VA hosptial about and hour away and within 15 minutes the doctor had diagnosed the problem and did a CT scan and proved his point. WE are so angry at these doctors for all the suffering that my mother and father has had to live with. It seemed so unfair and unjust. I cried at relief for my father at last--and I cried too, that I almost lost to suicide so people need to realize how painful this condition can really be, we've lived it and it is not an easy thing. Name: "sue" 32 years ago I began experiencing facial pain. My medical doctor thought I was "imagining" this and prescribed thorazine. The medication didn't work to stop the pain and in addition I was so drowsy - I was banging into walls, etc. feeling quite drugged. I found a neurologist and he referred me to a doctor in Syracuse, NY. (I lived in Minneapolis, MN.) Previous to this I was taking injections into my face - novacaine..this was short lived as I was told the scar tissue builds and another treatment must be sought. I saw the doctor in Syracuse and he injected novacaine into the base of the brain - the ganglian nerve. I had minor numbness for 31 years....and no more pain. I have felt the pain slightly only twice. Now it seems to be recurring. I have experienced the death of my mother, my nephew and the sudden death of my husband this summer. So, I'm wondering if this is stress-induced. What treatments exist today. Has anyone ever heard of the injection to the base of the brain. I was pretty satisified for 31 years. Looking forward to comments. Sue Name: marilyn evans I was diagnosed with tn 5yrs ago 7 WAS PESCRIBED TEGRETOL I HAD SUCH A ROUGH TIME WITH THEM I WAS SENT TO A NEUROLOGIST & HE PESCRIBED BACLOFEN TO GO WITH THE TEGRETOL SO I COULD CUT THE TEGRETOL DOWN A BIT THE PAIN BROKE THROUGH SEVERAL TIMES & EACH TIME I PUT THE TEGRETOL DOSE UP MY BODY BECAME TOXIC & I COULD NOT FUNCTION. I DECIDED TO GO TO A NEUROSURGEON TO HAVE MVD & THE PAIN STOPPED I AM still on a small dose of tegretol & baclofen but the problem is I also suffer from high blood pressure & have to keep having my tablets increased as the tegretol is eating up my blood pressure medication & i am so depressed.My dr. told me that neurinton has been released in australia which would be great as it does not have the side affects that tegretol has but until 2002 it is approx. $200 a month supply.people have no idea what it's like they can't see you in pain so they think everything is okay.it's good to talk to people that really do know exactly what you go through. Marilyn Evans Name: Lori Just an update as to whats going on since the gamma knife suregery in Dec of 2000, Felt great not pain, no drugs, until about May, and then I started getting numbness on the same side, thinking it was just a delayed side effect of the Gamma Knife, I didn't worry too much, until in September the shooting pains, started again as little twinges, and now is back in full force almost. Trying still to avoid the tegretol,I am taking Vitamin b-12 , which helps with the numbness some and I am seeing a Upper Cervical Specialist, who has me seeing him 2 days a week for 12 weeks and then once a week for 6 weeks, so far I can see no results, just a very sore body, he says it will take awhile to get everything aligned, and then as it heals correctly, I should have relief, I am skeptical,and if my husbands insurance did not cover his charges, I could not afford the route, but I really have to put my faith in Him right now, because the only other alternative I see is future surgeries, or a life on Tegretol, which for me is NO LIFE, because I can't function as a person on it...... So, we shall see, I pray this works, because I don't know where else to turn......... Name: kevin hi i'm 36 yrs old 5 mnths ago i started ear pains for the longest i thought i had some kind of ear infection but thin the left side of my nose started hurting to one night about 2am it got really bad so i went to emergency the docter saw nothing wrong and told me to take some asprin i was kind of mad because i knew it had to be somthing, any way a few days later about 4am i got realy,realy bad so bad i could not sit still so i went to another hospital and told the docter what my symptoms where sharp pains on the left side of my face he then told me it was tn i was glad at that time to at least know i was not crazy i knew this pain was not normal and its hard to explain it to someone who does not have tn i honestly have to say it's the worst pain i have ever felt my nose,temple,jaw teeth eayes and lips where just wrecked with pain i would have had brain surgery to end the pain, well the docter told me to see a neurologist so i did she did a cat scann and saw nothing wrong with any of my nerves she said because of my age its rare for me to have tn she said it's mostly due to old age and thinning of the veins which tend to overlap ,or somthing putting pressure on the trigeminal nerve whuch was my case i had a svere sinus infection which was not draining i had surgury had that stopped the pain dramaticaly i still have little twinges but very minor ones i think it's due to some bad teeth that need pulling i don't know if this letter helps anyone i know the other letters helped me alot to know i was not the only one dealing with tn Name: "JO-JO" I'm writing for my step mother who's had this condition for as long as i can remember. I grew up under her care and i've always treated her like a real mother. She's very special to me. She is 62 years old and until now i still see her cry and roll in pain. She's here visiting me from the Philippines and going back on the 15th of this month. I remember when i was young and we were living in Israel, she was always in and out of the hospital. She got treatment everywhere and by alot of top doctors. But it seems all the years that we've stayed there, she was never cured. We've even gone to spiritual healers hoping for a cure, but unfortunately nothing happened. I read in the internet that there is a way to stop this once and for all and that is through surgery. Unfortunately, we cannot afford it. I am still hoping and keeping the faith that one day my mother will finally be cured and live her remaining years painless and happy. Name: kevin, hi i'm 36 i was treated for tn about 4 months ago it started when i startes having real bad pains next to and in my ear i thought i had a ear infection, but one night it got realy,realy bad so i when to the emrgency room and they said to take some asprin and that was it,i left mad because i knew this type of pain was not normal and i knew i was not crazy, two nights later same pain this time worse my nose,temple,lip and jaw was all in pain so bad i could not sit still so iwent to the emergency again 4am in the morning,this time another docter saw me and told me what i had tn, i felt a little relief at that point to know what it was and that i wasen't crazyit's hard to explain the terrible nerve pain of tn to someone who dosen't have it you'd be willing to have brain surgry to end the pain if you had to. but any way the docter said to see a nurologist so i did , she did a brain scan and saw that my nerves were fine she said most youg people do noy get tn it's mostly caused by iflamation of somthing to the trigurial nerve or a nerve overlaping of it , but what she did see was that my left sinus cavity was full so she sent me to a nose docter sure enough my sinus was not draining so i had it drained ,the pain has subsided dramaticaly but i still had some miner pain my nurologist said to get some of my bad teeth in the back pulled which i did today hopfully that will takecare of everything , i do not know if my experiance will help anyone i know reading the other accounts helped my to know i was not the only one with tn thanks Name: sue I would like to speak to anyone who could suggest what I could do. It has been suggested to have a neurostimulator implanted with electrodes in the brain. Is there anyone who has done this procedure or has any information regarding it? I recently had botox injections that were not successful. Is there anyone out there who has had a similar experience with a droop of the upper lip as well as a continuing pain resulting from gamma knife and MVD surgery. I am on various medications. Thank You, Sue Name: Rhonda My 65 year old mother has TN. Her pain started in January 1999 but the actual diagonis wasn't made until the fall of 2000. I believe it is considered to be atypical because the pain has been constant. She has never been forunate to have any periods of remission. Last December she had the gamma knife procedure done. It lessened the intensity of the pain but didn't not eliminate it. The amount of pain medicine that she required did not decrease either. Around May of this year the pain worsened. She basically had to be sedated and keep in bed for six weeks until they could do surgery. I believe the type of surgery she had was microvascular decompression. She had this surgery two months ago today. Before the surgery she was on a liquid diet only because she could not eat. She still has the pain but she in now up to a soft food diet. Some of the med she is taking is methodone twice and tylnol every four hours. Our family doesn't know if this means the surgery was unsuccessful or is it the normal recovery for such a major surgery. Does anyone know what the typical recovery process is? Our family is praying that as she heals from the surgery the pain will go away. At this point we would be happy if the pain was at least managable for her. Needless to say this has put quite a strain on her and my 73 year old father who is her main care giver. My mother is also suffering from depression and anxiety attacks which leads to bouts of vomiting. Various family members has suggested counseling but they seem to have a "we will do this all by ourselves" attitude. On top of all this I am getting married at the end of the month. Naturally my mother is upset that she isn't well at this time. Can the depresssion and anxiety actually slow and hamper her recovery and or cause/increase the pain? Our family feels like it up against a brick wall right now. Any suggestion or informationn will be greatly appreciated. Thank you Name: kristy Sun- toothache, woke everyone up Mon-feels better Tuesday- comes home from school with severe tooth pain. Visit denist who says teeth are fine. within 2 hours, in emergency room for severe pain. Emergency room doctor transferes my son to Riley Childrens hospital. Neurologist there states he needs to see a denist. After hours of screaming the doctor gives him Naproxen and sends us home. Wed- attaches occur throughout the day. Eric sleeps alot and takes lots of advil Thursday- E. R. visit. Eric is on the floor in pain. Er Dr. states TN, but has us go back to his denist. Denist confirms TN and gives Lortabs. See GP who confirms TN. He prescribes Tegrotol. Fri- Eric is in such severe pain. I hide the Lortabs (he wants more). Eric states he is afraid to go any where. This has been our first 4 days on TN. My son is an active 13 year old boy who plays soccer, basketball, baseball, football and is in Boy Scouts. He is now unable to leave the house to go for a short ride. I would like to hear from others who may have children with this disorder or anyone who has words of hope. Name: MICHELE HELLO MY NAME IS MICHELE. I HAVE HAD PROBLEMS WITH MY TEETH SINCE I SERVED IN THE MILITARY 14 YEARS AGO. WHERE THE MILITARY FAILED TO TAKE CARE OF THEM. I ALSO HAVE HAD SERVERE HEADACHES FROM THE PRESSURE THAT WAS PUT ON MY BODY WELL IN THE MILITARY. I HAD ROOT CANALS DONE ON MY TEETH. IN 97 MY ROOT CANALS I HAD DONE STARTED TO HURT AGAIN. I WENT TO A ROOT CANAL DOCTOR AND HE DID ROOT CANALS ON MY TEETH. THE ROOT CANALS HE DID ON MY TEETH, HE RETREATED. THE PAIN WAS SO SERVERE BY 99. HE REFERRED ME TO AN ORAL SURGEON. WHERE HE PERFORMED DENATL SURGERY ON ME. IT WASN'T HELPING. HE REFERRED ME TO A PAIN CLINIC WHERE THEY DIAGNOSED ME WITH OCCIPITAL NEURALGIA. WELL WHAT HE SAID WAS THAT I HAD A COMPLAINT OF PAIN IN THE BACK OF MY HEAD WHICH SOUNDED LIKE IT. IT WAS A SHARP STABBING PAIN IN THE BACK OF MY HEAD. HE PUT ME ON NORTRIPTYLINE AND A PAIN MEDICATION. IT REALLY DIDN'T HELP, BUT IT WAS BETTER TO BE ON PAIN MEDICATIONS THEN NOTHING. I ENDED UP AT ANOTHER PAIN CLINIC WHERE THEY TRYED BACKLOFIN, TEGRETOL, AMITRIPTYLINE, AND ULTRAM. I HAVE ALSO TAKEN CODIENE FOR THE PAIN. I TOLD MY DOCTOR I WAS IN SO MUCH PAIN IN FEB OF 2001. I WAS TAKING MORE OF THE ULTRAM THEN I SHOULD HAVE BEEN. AT THE TIME I WAS ON AMITRIPTYLINE AND ULTRAM. HE TOLD ME THERE COULD BE A CHANCE I COULD HAVE A SEIZURE. I HAD TWO SEIZURES. I FALL IN THE BATH TUB BLACKENED MY EYE. I WENT TO THE HOSPITAL THEY TOLD ME IT WAS A BROKEN BLOOD VESSEL. WELL 2 WEEEKS LATER I HAD A GRAND MAL SEIZURE. THE DOCTORS BELIEVE IT WAS COMING FROM THE MEDICATION. I HAVE BEEN TO A NEUROLOGIST THAT HAS RULED OUT THAT I HAVE TRIGEMINAL NEURALGIA. I JUST WENT AND A DOCTOR RULED OUT ME HAVING TMJ. I AM IN CONSTANT PAIN 24-7. MY TEETH HURT SO BAD. IF I EAT, BRUSH THEM, DRINK ANYTHING THEY BEGIN TO HURT SO BAD. I WENT TO HAVE THEM CLEANED LAST TIME AND CRIED. IT HURT SO BAD. MY DENTISTS WILL HAVE TO NUMB ME. IF ANYONE OUT THERE IS EXPERIENCING WHAT I AM WOULD YOU PLEASE EMAIL ME, OR IF A DOCTOR READS THIS AND KNOWS WHAT COULD BE WRONG WITH ME PLEASE EMAIL ME. Name: Barbara For at least 2 years I have suffered pain in my scalp, forehead and eye. One minute I can touch any of these areas and I'll be fine, and minutes later get piercing pain, esp. in my eye just adjusting my eyeglasses, or touching my forehead. Also, most times when I blow my nose, it will set off the pain. Of course, talking and chewing will do the same thing. Do you know of any drug that will cure this painful condition? Thanks for any information you can give me. BT Name: BLS would like to hear from someone with similar symptoms. My facial feels like it swells up, & starts moving around.Like it was 2 feet long, trying to settle down in a 6 inche area.Sometime I will have this feeling for days before the pain.I also have a tingley numb feeling all over the left side of face & up into top of my head. It stops at half-way point in top of my head. I just freeze for a few seconds when this happens. I would like to hear from anyone having similar symps. Name: Darla Hi, I've had this pain since 4/97. Had the MVD in 12/97, but had a head on car collision on 3/8/98, which undid everything. I've had nearly non-stop pain since this started. I would love to hear froom people near me (bethany, OK and perhaps get a support group started. This is a nightmare that is very difficult to go alone. You can mail me at 7801 n.w. 29th srreet, Bethany, OK 73008. If you knnow of a support group or would like to be in oone, maybe we could start one just to share wwhat we have been thru. Blessings to all. Darla griffin Name: Norma I have had trigeminal neuralgia for 11 yrs. After reading all the stories here, I feel very fortunate. The pain I have is excruciating, but is so lightening fast that when it reaches the unbearable it is then subsiding. Sometimes tho, when it is really bad, instead of scattered spasms throughout the day, the pain is more like a pulse. That is when I find it hard to function. I ususally have a couple weeks of remission, but those times seem to be fewer and farther between. The TN is on my right side, in under my cheekbone. At some point I know I may have to seek treatment of some kind, if the condition worsens, but I have no medical insurance, and from what I have read here, surgery does not guarentee the pain not returning. I have another condition that I have had for 20 some yrs. On one side of my head, face or neck will experience pain that feels like a sunburn. People thought I was crazy when I'd say my skin hurt. When the top part of my head is involved, it hurts to blink my eye. My scalp will be sore (like when you take you hair out of a barette that has been in all day...not that you guys out there can relate to that!!) If the lower face and neck are involved, my gums, nose, ear, and the inside of my throat feel raw pain. When I first had this, I would think I was coming down with a cold...burning in the nose and sore throat. Then I'd wake up the next morning with the pain all over that side of my face. Sometime I also experience sharp stabbing pain in my ear or neck on the invloved side. Ocassionally this will be on other areas of the body. Shoulder, arm, leg, but it is most painful when it is the face or neck. A neurologist dx was that it is a form of Migraine. It does move from side to side, usually lasting a couple days. If it is on the right side when I am having TN, then I'm really in for a fun day!!! This thing happens a few times a month, and if it is migraine, I am glad I have this form rather than the typical migraine headache, cuz I can function with it alot better. I treat both of these problems with asperin or advil, with some relief, but have to take it every couple hrs. A Dr. just gave me a rx for darvocette, to see if it helps. I took tegretol 11 yrs ago, but broke out in a rash, and gained 5 lbs in a week, so quit that. From the sounds of it, I think I am better off just dealing with the pain episodes when they happen. But, I have not experienced the level of pain that would have me rolling on the floor as some of you have described. Has anyone else experienced the skin soreness like that? It sounds kinda like the Atypical TN that some have described, so I'm not sure of the dx of migraine...Best wishes to you all. Hope they find a cure for this awful disorder. God bless..N Name: Angela About two years ago I had skin graf surgery for receeding gum lines. I have been diagnosed with Trigeminal Neuralgia. I have chronic pain and burning sensation at the donor site, a/k/a the roof of my mouth (left side) where the skin was taken for the graf. I have been to numerous doctors. I went to Shands Hospital for a year and a half for treatment. Nothing seems to help me. I am alergic to Codeine, Neurontin, and Elavil. Klonipin makes me feel semi-zombie, so I can't take it during the day becuase I HAVE TO GO TO WORK! I recently started Acupuncture. I went back for my second appointment and the doctor quit or got fired, I don't know. She is a chiropractor and certified acupuncturist but no longer there. Boy is this frustrating!!! Please share any success stories that you might have. Name: Vickie After reading some of your stories, I feel greatful that my doctor at the Emergency Room had some knowledge of TN. I ended up at the ER after having severe pain that seemed to start from my lower jaw and radiate up the side of my nose up to my eye and to my lower ear. My husband made me go after seeing me in tears from the pain, unable to walk or talk and barely able to breathe. When asked how I ranked the pain, my response was that it was an 8 on a scale of 10, since I wasn't in pain right at that moment, the nurse looked very skeptical and almost smirked at me. The doctor poked around the tooth that I told him needed some attention and there was no tenderness or pain. He asked me to describe the pain to him and how it radiated. It took him about 30 seconds to tell me that he thought it was TN. He prescribed Vicodin at 1500 mg every 4 hours to aleviate the pain until the Tegretol took effect. I felt nauseous and drugged for 3 days. I followed up with a dentist who told me I should have the problem tooth extracted. I followed up with my Primary Care doctor who did sinus x-rays, no other source of pain can be determined and she gave me a referral to a neurologist. I am going to the neurologist on 8/29. If there are any specific questions I should ask I would like to know. I am 31 years old and have never had an episode like this. Can I expect that it will just get worse? Or is there a chance that since it was caught quickly that I won't need to worry about it? Is it possible that the episode was stress related? For the women, did the tegretol cause breast tenderness? And I read somewhere about bruising; my bruising has become noticibly worse just in the past week. Instead of having a green or brown hue they seem to be bigger and more blue or purple in color. If anyone has any answers or advice, I will appreciate it very much. Name: "Potentate" I too have suffered with TN since 1989. It started right after a root canal on the upper right molar,Thinking it was an infection of the sinuses and teeth, the MD put me on massive doses of antibiotics. I would take them for years on and off and at times my condition would improve slightly. But then I became allergic to many antibiotics and I also built up a resistants and would have to take stronger and stronger antibiotics. As you sufferers with TN know so well the pain can be excruciating day by day it is horrible. At times the flare ups put me out of commission. My right side of the face is affected, the upper and lower teeth, the cheek, ear, and tongue. At times I am unable to talk, even swallowing is a nightmare. Have missed more family get-togethers and other things, just because of the horrible pain. I am taking daily 1500 mg Neurontin,Ultrams, Soma at bedt time, occasionally Tylenol #3. I am allergic to Tegretol. The one thing I must share with my fellow TN sufferers. Throughout all the years of agony, I have been kept from depression and giving up attitude. This I give credit to God and Jesus Christ alone! Have totally given my life over to God, and since then I have experienced incredible peace and joy! My heart is always joyess, just knowing that Jesus Christ is with me and He will never fail me or forsake me. He also promised His healing in His word, Isaiah 53:5 and 1Peter 2:24. I have been selected by the University of Seattle to have Gamma Knife surgery. If anyone has had this procedure I would love to hear from you. Any pros and cons about it? Thank You and God Bless You. Name: Brad I had micro decompression surgery in 1998. Seven months ago the pain was back I have been on neurontin for a couple of months with great great results. But the pain is back worse than ever. I taking hydrocodone which seems to help some. My doctor suggest the gamma knive. Any thoughts about that. Please Help. but Name: Lisa I have been experiencing facial pain for 6 1/2 years now. I had to undergo physical therapy for 6 months after injuring my neck,arm and shoulder. Right after I finished therapy I began to have facial pain that lasted up to 2 weeks at a time {every month}. My doctor claimed that I was just depressed because I sat in his office and was crying and half laughing because he could not figure out what was wrong with me. He then prescribed Elavil for me. I did take it and in the meantime have been through doctor after doctor and dentists and oral surgeons {as many of other people have claimed}. I did not let the dentists pull any of my teeth or talk me into any root canals as they could not be certain that this was the cause of my problems. My new doctor referred me to a neurologist only because I kept going back to him and complaining of my face pain. The neurologist tried all kinds of meds but to no avail. I kept going back to him because I was still in severe pain. He finally sent me to a neuro-surgeon, who claimed that I had TN. Therefore I underwent the mvp surgery and had relief for 1 1/2 years now. The other day I began to experience short bouts of the pain again. This started after I began to have neck and shoulder pain again. I became depressed so I hopped on the internet to research to see if anyone else had a reoccurance. I found out enough to discourage me plenty! I thought to myself that there must be some connection between the neck and face pain. I did some more digging and came up with a site called NACUCC (National Awareness Campaign for Upper Cervical Care, Inc.) that many of you may want to check out. Although it may not help everyone, it may help some of us. I have not been to a doctor yet, but I am going to check it out. It sounds as if we are all having surgeries on the wrong areas--head vs. neck. The nerves associated with the neck are in relation to the trigeminal nerve, therefore this may be what the whole problem is!!! Since I am starting to get the face pain back I plan on checking this out. God bless everyone with this condition and may we fight back and finally get some relief!! The web site that i visited is www.uppercervical.org in case anyone would like to research the topic. Thanks sooooooo much for everyone,s input and stories of their face pains. Lisa Name: margaret ALLERGIC REACTIONS TO TEGRETOL AND DILANTIN SAW ME TURNING TO ALTERNATE THERAPIES IN ATTEMPTING TO BECOME PAIN FREE. I FELT LASER ACUPUNCTURE WAS THE ANSWER INITIALLY - YES - 12 MONTHS RESPITE AFTER A SERIES OF TREATMENTS. BUT SUBSEQUENT ATTACKS WERE LESS SUSCEPTIBLE TO THIS METHOD OF RELIEF. THEN CAPSAICIN SEEMED TO HELP. I STILL USE IT 4 TIMES A DAY, TOGETHER WITH NEURONTIN. MY PAIN IS CONTROLLED. WHEN THE PAIN BECOMES INTENSE I SHALL HAVE AN M.V.D.FROM THE BEST NEUROSURGEON IN SYDNEY. I HAVE CAREFULLY RESEARCHED THIS CONDITION AND THE VARIOUS TREATMENTS AVAILABLE. Name: Mark Where do I start, I went in for major back surgery on 4/10/01 and was perfectly fine. After 7 1/2 hours of sergery laying face down I awoke to a numb spot on the top of my head,one on the right side of my face and one on my lower left rib cage. I asked my spinal surgen about it and he said don't worry about it they will go away in time. Well after about 6 weeks the one on my head started to go away as did the one on my rib cage but the one on my facedid not. At first the right side of my face started to tingle like little needles and then the burning started. I told my surgen what was happening all along and he finaly started me on 300 mil. of Neurontin and 100 mil of Ultrom and made me a referal to a Neuroligist. Ya! 5 weeks away. By this time I was rolling around on the floor in the most agonizing pain I'd ever exsperience in my life, what a nightmare. Six week's ago I finally saw a Neurologist he ordered up a MRI to see if I had any tumer's ect, came back except some kind of mass on my right side sinus area. Where they layed me face down. My wife said that when they brouht me from surgery I looked like someone had socked me in the right eye, I was all purple there. The Neurologist has diegnosed me with Trigeminal Neuralgia what a bummer!!!!!!!! He kept me on the neurontin but started uping the dose. Started me on tegretol and celexa made me a referal for ear,nose and throuht doc. Get this I am currently on 3600mil.Neurontin,900mil.Tegretol and 60mil. Celexa per day. Some releif from the major burner sezuirs but still have constant throbing and burning. Never in a million years would I'd a thought I would go in for back surgery and come out with this!!!!! By the way I had a lower lumbar fusion and I am 43 years of age. Anyone out there with any advice I sure would like to here from you!!!!! Name: Tedi I was diagnosed on June12th with this nightmare. The pain and trigger points continued to increase. TN on my right side, middle brach. Within 3 weeks, I could not eat , talk or brush my teeth. My dentist made the initial diagnosis. My PCP did not know what to do...I demaded a drug attempt form all the reading I was doing. We tried Tegretol and I had severe nausea that inhibited my ability to work or function. I had to chose between being doped up or not being able to function. Further reading led me to demand trying Trileptal...my PCP told the insurance provider that I would not 'tolerate' the other drugs. It has worked. I take 300 mg three times a day. I must take the durg on schedule, otherwise the pain returns. I vist a Neurologist tomorrow to discuss long term effects and considerations. I at least feel there is hope. Name: Guy My facial pain started in March 2001 and has been continuous since then.The location of my pain does not seem to correspond with many of the accounts posted on this web page. That is my pain is not on one side of my face or the other but rather is centred on my chin and the under chin to the throat area. I have yet to receive a diagnosis but perhaps I've got atypical atypical facial pain??!! Initially the pain started as 'sensitive skin' which made shaving very difficult. This rapidly developed into a constant hurting sensation, sort of stinging, burning, tingling. This soon developed into a 24 hour pain which is made much worse by eating. It is usually after eating that the pain intensifies and the area under my chin to my throat becomes numb and occasionally it feels like I'm beginning to go paralysed there. Eating has become very difficult as I know the consequences that follow are extremely unpleasant. This has led to me not eating all day until the evening. I have lost about 25Lbs in weight. I have to avoid hot food as this exacerbates the situation. I try to eat soft foods. Unfortunately my appetite is as healthy as it ever was. I dream of being able to eat a meal and just enjoy it!!! Wind, central heating, water, etc all exacerbate the pain. I can't even touch my chin gently without feeling sick with pain. When I first started experiencing this problem I thought it might purely be a skin problem as the area under my mouth to the chin can go a bit pink/red.Also when I use my beard trimmer to keep my facial hair as stubble (shaving is impossible)the skin in this area flakes off. For this reason I tried some antiseptic cream, then lotion but this made it much worse. I then thought it might be execema and so tried some emollient cream ... ouch!!!!!!! I then went to see my first doctor who was not interested in getting into a dialogue with me to hear my description of what I was experiencing. He did not even examine my face but rather prescribed me a months worth of antibiotics. These did not work. I think partly due to a busy work life and perhaps more honestly due to being in a state of denial (my brain kept saying this can't be happening and it will go away soon) I didn't go to another doctor for a couple of months. My disallusionment with my doctors responce also influenced this inaction. Anyhow I have registered with another doctor who has listened and taken my situation seriously. This doctor has referred me to a neurologist (I'm waiting to hear when my appointment will be) and has prescribed me amitriptyline (20mg a day with no impact as yet). The dosage is to be reviewd in the next few days and will, I should think, be increased. This doctor feels that my problem must be some sort of neuralgia due to the numbing, tingling and pain. I must admit that I thought he was going to refer me to a dermatoligist but he said that nerve damage/conditions can affect the skin in this way (as in the case of shingles). Have any of you had a similar experience to mine? Can anyone tell me anything useful about taking amitriptyline long-term? Any other tips, advice, comments and opinions about what I have written would be gratefully received. Thanks for taking the time to read this. Guy Name: Renee I have had 26 major surgeries on my right sinus. I had an aggressive fungus. I had to keep having surgery to keep my sight, and the fungus out of my body. The fungus invaded the optic nerve once. Well to make a very long and complicated story short the nerve in the ride side of my face have been damaged from so much surgery. I have been told that I will have to live with this because surgery on the nerve could make it worse. I have cried and cried like a baby. I just want the pain to go away so I can have a normal life. I am only 26 years old and I'm always in major pain. Sometimes I hurt so bad I don't know if I'm gonna make it or not. I also have very high blood pressure from being in so much pain. I am also on 2 medications for that. My blood runs 150/120. That is dangerously high for a person. I am at the end. Name: "Cachet" I am a 55 year old woman. I am not even sure when this started. I remember having short episodes for a long time but ignoring them so as not to frighten my kids. They would go away quickly..and not come back for a long time. Then about 4 months ago I had an "attack" in the grocery store parking lot. The pain was so excruciating that I fell on the ground. This pain begins at the back of the jaw kind of under and behind the jaw, on both sides! It radiates to the front of my jaw and down both sides of my neck, into my shoulders and down my arms. In the process I find it really hard to breathe as the buring sensation in my throat is almost unbearable. When having this pain in my jaw and down my neck all I want to do is rip out my jaw! It is unbearable. I have considered having all my teeth removed. Anything to get out of this pain. I have had CAT scans, MRI's every cardio test they can think of and seen a neurologist who says I have TMJ. Well, I do NOT have TMJ. This jerk didn't even check me out! Just came to that conclusion! (I have to go to the VA Hospital, so my doctors are limited sometimes.) My primary doctor has been going crazy trying to figure out what is happening to me. She said it definitely is NOT TMJ. She evidently did some research on TN. She called me at home yesterday and told me about it. There were symptoms that fit me to a tee. She increased my medication (gabapentin and divalproex) and said we would increase it more but slowly. My pain is not constant, thank God. The attacks began at a rate of about 1 every 2 weeks or so and then 1 a week, then 3 a week, then 1 a day and now numerous ones everyday. I am scaring my husband to death although he knows what is happening. He is totally blind and as you can understand, is really having a problem with this. Thank God he loves me so much and is so supportive. We have been married almost 1 year. It is really hard on him as well as myself. My attacks last about 5 minutes at a time..then they can come back within a couple minutes or just go away until later in the day or the next day. You never know. My quality of life is terrible. I don't want to go anywhere anymore for fear I will get an attack. I am afraid to drive and of course, my husband cannot. I very seldom even go outside in the yard anymore. The depression is overwhelming. I have been on anti depressants for about 4 years now, but they are not enough to get my mind in a good place anymore. I have lost my job because of this. My life is hell but as I read other stories I realize this could be much worse. I read somewhere on the internet about a hospital in Ohio that has a department that specializes in facial neuralgia. Has anyone heard of this? If I can find it again, and if all other things they are doing prove fruitless, I think I would like to check that out. Thanks for listening. I was wondering if anyone else out there has the symptoms I have. I also get the burning, crushing and stabbing pain in my jaws and down my neck and shoulders. I can also feel an attack coming on...like I just don't feel right and then a slight pain begins in back of my lower jaw. I have about 10 seconds to get someplace to sit or lay down as the pain is too much to handle standing up! My doctors ask the level of my pain..1 through 10...I tell them 10 being childbirth....and NEVER saying before anything was that bad...this is a 12!! I am just beginning but at least my doctor seems to be on the right track. I read one person on here that said just putting a name on this thing was a relief. I feel the same way. I was feeling that I was the only person out here with this thing. In the beginning my doctors said they had never seen anything like this before. The neurologist I have had to see is worthless so I think I will try to see another very soon. If anyone is experiencing anything like this, please email me. Let me know I am not alone.
Name: Rita Since my surgery in 1998- pain recurred oct 1999. Restarted Tegretol- since I was allergic to Neurontin and Dilantin- 10 days after I started them taking 300mg a day- my throat was very itchy and I cough a lot. on the 17th day I got up with a terrible head ache and sore throat and itchy throat...I then started Baclofen only. January 2000 I was on 50mg of Baclofen my throat was itchy and I cough a lot worst durring the night.. Since its the only kind of medication I can take for TN I thought nothing of it. I went in remition in Mar. 2000. I had Pulmonory test done Mar. ist 2000, I was diagnose with mild brochitis asthma and put on Serevent and Flovent and Singulair. January 2001 TN started again..started Baclofen. When I reach 70mg of Baclofen a day in March my troath itch a lot and cough a lot...My stomach hurted and reflux realy bad...had to sleep sitting down..been going for test for my stomach since. To day August 6th I notice for the last 2 days don't cough during the night..I started cutting down my Baclofen 2 weeks a day..I am now down to 2 a day...SO I MUST BE ALLERGIC TO BACLOFEN TOO? My Neurologist gave me AMITRIPTYLINE which I tried one 10mg one night..I had nightmare and felt tired as if I didn't have enough sleep. Very worried if Tn comes back again...which will problably come back.... wouldn't mind receiving comments to this. Rita Name: robert I was experiencing tooth pain in the left rear of my mouth. I thought nothing of it and continued on with my life. I then began to expereince head aches that I attributed to sinus infection I visited an ent who sent me for sinus X-rays. That very night the pain was so unbearalbe that I had to visit the emergency room. I eventually made four visits to the ER for pain medication before I was referred to a neurologist who prescribed the above listed medicine. I now have a minor aching head ache, it seems as if the monster is in my head just waititng to break through. Can any one tell me will I be on tegretol forever? Will that pain only be a few pills away? I am meeting my neurologist for the second time on 08/06 so these questions and many others are yet unanswered Name: Sandie ongoing problems since oral surgery, Nov 1989. pain, burning, swelling, redness..... no fun! Name: Karine I am a 25 year old. I have TN i have been dealing with this for about a year. I have two small children and a husband. Who has been by me. At first they didnt know what it was so i went to doctors after doctors so finally i went to a nearologist and he new right away what is was i really didnt understand so they put me on meds after meds so finally it was the last draw went i had to go to the er so the doctors said well we need to do surgey so i went for surgey and the doctors were very surprized that i went throught eight months the nerve was dirctly on the bone but i was so happy cause after i woke up i was pain free but that didnt last two weeks after the pain started coming back their i go right back on meds and right back being depressed and it was hard on my children and my husband well i right back where i started now my doctors want me t go to gamma knife so i am just praying that this is going to work.Well if anyone wants to tak or share stories please email me at karine2001@webtv.net Name: "Lisa" A close friend of mine is suffering from this condition. I was surfing the internet to find information on the subject, and I came across a story on this website from a woman who wrote in trying desperately to find some relief from this illness. She said she was 36 years old. I didn't take down her information, and I can't find her letter anymore. I hope that she consults this website frequently and will find this response. My Friend is being being treated at the Neurological Institute of New York City, and underwent "Gamma Knife Radio Surgery". My friend is currrently taking a combination of Neurontin and Tegretol. Everyone is treated and responds to medication differenly. This seems to be working for her. My friend and I would like to pass along this information with the hopes that it may help that 36 year old woman, or anyone else suffering from this painful disorder. Name: Gavrilah So far I have been from dentist to ENT to oral surgeon to neurologist to back to one of the doctors...I have had two CT scans and two MRIs, many x-rays and no diagnoses except for the ENTs saying that I have TMD and everyone else ruling that out. It has been over five years now. I have a consistent slicing pain and a taste between my back teeth upper and lower second to last molars. And a radiating pain from my right eye down along my right side of my face down my neck to my shoulder. Noone (doctors) seems to know what NICO is and they act as if I'm a hysterical hypochondriac when I ask about it. Much more... Name: joy I have suffered from trigeminal neuralgia for 3 1/2 years with no relief from medications. When it became unbearable I underwent a glycerin rhizotomy at Johns Hopkins University in Baltimore.Dr.Ben Carson was the surgeon. The surgery was 6 days ago. I am now completely pain free. My only regret is that I did not have this treatment earlier. Name: Libby I have not been diagnosed with neuralgia "Yet"but, believe this is what I have. I get this pain that is so strong that it feels like someone has just hit me full forse with a hatchet and it's coming throught my head and out my right eye. It's always there but, sometimes I can go for a week or more with out it reaching that strong point. I can't see any one thing that triggers it. It just comes. When it is bad my balance is off. I feel dizzy can't sleep or even think. I thought it was sinus,was treated that isen't it. I did have C4-C5 fusion on my neck almost a year ago. Thought maybe I ruptured another disc. Had an M.R.I. done this week and all looks well. Please, can anyone offer any suggestions. Life really stinks at this point. I'm afraid to do anything for fear I will set this head pain off once again. Thanks for listening, L.R.M. Name: "Whitecap" After a 17 year history of trigeminal neuralgia that followed the typical pattern. Periods of blissful remission, it would return with a vengeance. Pain episodes were closer together and more intense. Finally, in 1996, the rhizotomy was dodne with excellent results. I have the usual areas of parasthesias. (Sometimes, it seems as if there is a bug in my hair. I know there isn't, but I get the hairbrush out anyway. After a four year interval with no pain, I was nagged into asking my family physician for a prescription for "Zyban", the stop-smoking aid. There was an alert that it could cause seizures. I took Tegretol for 17 years for the neuralgia and it is also given for seizures. I didn't put the two facts together until it was too late. I took the Zyban for 8 days. I hadn't even reached my "Stop-smoking" date yet, and I was suddenly attacked with the Trigeminal Neuralgia pain on the LEFT side of my face. My prior history was on the RIGHT SIDE. i checked with my physician immediately. He said "of course it could cause that to happen if it could cause seizures. It is a cranial nerve group" I had to resume Tegretol for another 8 months. I have had brief intervals of remission since. I am a retired Registered Nurse. I try to keep myself informed and aware of such things. You do get blind-sided every now and again, though. I would love to hear from anyone who has had a similar experience. Name: phyllis My pain started in the summer of 1982. It was not very bad. It just seemed like a tooth problem on the lower right side. I had a lot of teeth worked on by replacing old fillings and the doctor thought that he didn't get the bite right. So I would go in and he would drill here and there and told me that he did not know what else to do. He sent me to a friend of his at a local hospital who was head of that department. He did a full set of x-rays and found nothing. He thought that it was just sensitive teeth and said that I should use a special tooth paste. I thought that I knew the tooth that was causing the problem and as the pain was getting worse I went back to my denist and made him pull a perfectly good tooth. The pain left for a while but came back. Finally the denist sent me to a neurologist and he told me he was sure that i had tn. He put me on tegretol. It helps most of the time. Some times I have to take a lot and it makes me not very with it. I am luck, my pain seems to go and come in one year intervals. I had a lot of gold fillings put in my mouth just before the pain started. Has anyone else had that experience? Name: "nephnurs" It started with acute vertigo and then dizziness and persistent left, stabing ear pain 17 months ago. Now, my migraines (which I've had for 30 years and have managed very well with depakote and Zomig have become "one" with a headache causing severe ear pain, throbbing left ear tinitus, dizziness and unsteadiness. Between major migraines I am left with the persistent left ear pain. Also, after a 2 week "seige" of migraine induced ear pain, dizziness, unsteadiness, tinitus I can also add a dull almost constant ache over my left sinus below the eye and it sometimes shoots across my face to my nose. MRI and MRA show an occluded right vertebral artery, a very tortuous basilar artery abuting the left facial nerve at the genu (also present in April, 2000). I can't find a doctor who will sit down with me to help me understand the anatomy and what surgery risks there are. I'm zoned on my medications and find it hard to work full time - I come home and snooze on the couch most of the evening. Help Name: Joan Diagnosed in May 2001..Electric shock type pain on the right side of the face..GP tried to settle it down by giving me Herbal Medicines..Did not work, Referred to Neurologist who prescribed Tregratol (Very bad side effects) than onto Dilanton (more side effects rashed hives etc) than onto Lamictal 100mls a day. When I first felt the pain I also had a lump come up in the roof of my mouth. Like a blood blister which was the size of a 5cent piece (Australian}. During the past 2 months or having TN was not able to eat, wash my hair, put my makeup on with out a lot of pain. It was the worst pain I have ever felt..I have been having acupuncture for 3 or 4 weeks now...I believe that this has done me some good...I have been pain free for 5 days and it sure is good to be able to eat again..My neuologist said that it may be short lived but I am looking at it positively and hoping he is wrong Even if the pain comes back, I will never take things for granted again..Just the things we take for granted...eating combing your hair, being able to go outside in the wind, having your hair cut and coloured,without experiencing the worst pain as only TN sufferers know ...So I say to all fellow sufferers never give up and try everything that may be of help to you...I believe the Acupuncture has been of great help to me. I will continue with it for a few weeks, although scale the number of times per week down. Take care and God Bless... Name: Lori The pains started 7/2000, I was under alot of stress at work, and thought I was having sinus problems, but then it got worse, and the dr said it was "migraine aura" yeah right....the migraine medicene he gave me did nothing, finally I went to him and told him I must have a brain tumor or something, because this was not a migraine.....I retold him my symtoms, he left the room and came back in about 5 minutes with TN description and I almost screamed when I read it, because I was so happy to have a name for it......he had me splash water on my face to get a reaction, and sure enough he got a good one........it was triggered by water touching my face, or a breeze, or sometimes just the way I turned my head.......I had never experience anything so awful in my life. He gave me drugs that stopped all the pain, but I was a zombie for the next couple of months, all I did was sleep and investigate TN on the web. I finally read about Gamma Knife, called my insurance company to see if it was covered, and made an appointment in Nov of 2000 and had the suregery a week before christmas. I have not taken any drugs since I walked out of the hospital.........but recently I have been experiencing numbness on that side of my face. I read about vitamin B-12 and have been taking that and it seems to help some days..... I don't know how long it will last, but it is much better than the shooting pain of TN. I will have the surgery again if it ever returns fully....I have a little zap once in awhile in the shower, but nothing major yet. I encourage anyone looking for relief to have the Gamma Knife suregery....it really saved my life, because I know I could not live with that pain or on those drugs much longer. Name: Kim I was 25 years old when I first started feeling the pain. My Dr. thought that I had a sinus infection. When the xrays came back with nothing, he told me to try the dentist. After having several dental appointments which included a root canal, which didn't help, the dentist said that the tooth was probably cracked and that he could pull it. I didn't care what he did, I just wanted the pain gone. I had the tooth removed but the pain was still there. He was beside himself. I began to feel as if I were going crazy. At this point, which would be about 4 years later, I went to a different Dr. and explained what I felt, I was a little embarrassed to describe the pain as I didn't want him to think I was crazy. Within 5 minutes of being there, he came out with his medical book and read to me, then I knew I wasn't crazy. He sent me to a neurologist and he put me on medication for six months, and I didn't feel any relief. He then referred me to a neurosurgeon. The neurosurgeon did an mri and he found what he was looking for. We decided the best solution for this was to do the Microvascular Decompression. I was a bit nervous, as I was only 29 years old and I had two children to look after. The surgeon went in and put a sponge between the brain stem and the blood vessel, and I haven't had pain on the right side of my face since. A few years later I started feeling the pain on the left side, this time it was ten times worse. It felt like all the nerves on the left side of my face were exposed. I couldn't believe what was happening again. This went on for several months and they tried to control the pain with Tegretol then Neurotin, but no relief was felt. I then went to a different surgeon as we had different insurance, and we discussed the decompression again. I was for it as it was a complete success the first time. At this point, I'm 32 years old, we did the surgery which he was only able to nick the nerve. This had relieved the more severe pain. Every so often I felt a little pain when I would wash my face, but I could live with this. Now, here it is, one and a half years after the second surgery, and the attacks are back on the left side of my face. I feel I am at a loss for what to do. I have an appointment with the surgeon in one week to talk about the gamma knife, I don't know where to go from here. People that have never had Trigeminal Neuralgia, can't even begin to imagine the pain we feel. Name: Deb 1992, I was in a dentists chair having all 4 wisdom teeth removed as they were badly infected & empacted. Once they got as much as they could out of my jaw they told me that they would have to leave some root ends behind (they had 'hooks' on them & they couldn't risk drilling any further) I was told they would 'disolve' over time.....I believed that. I then was put on anti-biotics (penicillan) & pain killers (panadeine-forte) Soon I noticed infection and then the rollercoaster ride was on. I had my tonsils out / sinuses scrapped within 4 months of having my wisdom teeth done, reoccuring infections, more antibiotics(penicillan) & pain killers (panadeine-forte). One morning I woke & had a huge headache & layed in bed until a knock at the door made me get up. My friend was shocked a my appearance as my left eye & surrounding face was very inflamed, I went to the doctor had a CAT scan and was told it was 'Chronic Sinus' more anti-biotics(penicillan) & pain killers (panadeine-forte). January 1997 I found out I was pregnant and I stopped taking 'over the counter' pain med. for my annoying 'headaches'. I was in agony throughout my pregnancy & my nose got extremely stuffy (which I was told was normal in pregnancy so I didn't worry about it). After the birth of my little girl I suffered Chronic pain radiating from my ear to my temple, nose, upper jaw & eye. My 'stuffy' nose completely blocked on the left side & I could no longer breathe through my left nostril. I was very scared & I went to the local GP who sent me for another CAT scan, it came back normal but he prescribed anti-biotics anyhow...this time I had an allergic reaction to penicillan. I thought that it had to be a dental so I went to the dentist & begged him to do something, I told him it was all of my teeth that hurt along the top jaw on the left hand side. He started probing & then 3 root canals, 2 extractions & a referal to an Oral surgeon who removed roots from the 2 extractions & the roots from 1992 under intravenous sedation occurred. I was then referred to a Professor who was adament it was a muscle spam & placed me on anti-depressants (dothep)& told me to continue on pain killers(capadex)which didn't help. I tried accupunture, massage, aromatheropy nothing worked, I felt there was no where I could go to next. My husband & daughter were suffering, my jobs, friendships "IT" had control. Taking up to 10 Capadex a day & popping valium in my mouth at night just so I could get 2 hours solid sleep, I thought of suicide many times, if not for my family I would have done it, but I realised that even in my drugged hazy state they needed me. By chance my company put on a new receptionist who I became close to, I told her of my "secret" & she told me her mother-in-law was a Sister at a nearby hospital. After a few phone calls she suggested I see a certain doctor. HE BELIEVED ME!! Even better he genuinely wanted to help me, I was diagnosed as having A-Typical Trigeminal Neuralgia. Although I am still taking a hefty amount of pain killers & valium, I have been put on a low dosage of Tegretol which I hope will ease the pain, I have a little bit of hope & I finally have someone who really wants to help me. This pain is indescribable, unless you suffer this, it is hard to imagine. I thank god for this site, it has shown me I am not alone & best of all - I'm not crazy! Name: "franksie" I was diagnosed with TN May 2001... After suffering with this dreadful pain for 5 days, I rang my GP, she advised me that I may have shingles..but after a visit to her I was told that I had Neuralgia...She said that she would start me on herbal medicine...namely Magnesim and S33 to try and settle down the pain..she said that if this did not help then I would have to see a neurologist..the rest is history... I went to the neurologist who said that there was 3 tablets that I could try before I would have to have surgery..anyway I was put on Tegratol which nearly drove me crazy with so many side effects, I was then put on Dilanton which also had side effects...namely hives and rashes..So off I went again to see him and was put on the Lamictal..this has had some results, but I also decided to try acupuncture...I am having some relief...I have TN on the right side of the face namely round the eye, forehead and head..as a result I have not been able to have my hair cut, and I am not able to chew on anything not even a piece of toast..I have decided to continue with the acupuncture and the tablets..Todate I have had 5 sessions of acupuncture and will continue for up to 10...I will let you know how I fair.. I really sympathize with all you TN sufferers as this is the most horrible pain...It is so hard to convince non sufferers how painful this is.. As I deal with the public and do shift work, I sometimes find it hard to concentrate... I believe that I contacted this disease from the severe stress that I have had in the past 2 years. Do other sufferers agree that this may be the case..Take care...Regards Joan Name: sue I have never had an operation re: trigeminal neuralgia, although at one point, I was desperate, but the pain only lasted one week and my tegretol seemed to work again. In the beginning stages my neurologist prescribed dilantin, and, it did not work. After that, he prescribed Tegretol and it worked within 48 - 72 hours. I couldn't believe how the suffering had ended due to taking medication. (In the past I was always the first one to tell people, "try not to take medication if you can help it.") I must also mention that while I was suffering with the worst pain on earth, I didn't even know what type of doctor to find. Eventually I found a neurologist who, in the beginning, administered acupuncture without medicine. Of course it did not help, so eventually he prescribed, Tegretol. In the beginning stages I was taking much less than I do now. I take more now because of the other medicine that I am taking to make sure that the tegretol stays in my body. Otherwise, I will lose a good percentage of it and I will not risk getting that pain back again. The best way to describe the pain is like as if the dentist is pulling your molars out without anaesthesia except the pain is even worse. I really can't describe it. I would like to know if there is anyone out there who experiences similar pain and also to let me know if tegretol helps them. Maybe even some recommendation of something that I didn't think of. Name: "contessa" The pain started 4yrs ago and I thought at first I might have a brain tumour and so was frightened to go to doctor. It got so bad I would crawl on knees and bang my head on the floor. My daughter phoned surgery one day and doctor came out to see me. He gave me co-proximal but they didnt touch the pain and 24 hrs later he came back and gave me temgesics which worked well but left me sleeping most of the time. The attacks lasted for about 3 weeks that time. I had the odd bad head now and then but about 1 month ago they came back with a vengeance. I have been in sheer agony and all the doctors have done is increase the dosage of the temgesics. i have had two nights sleep in three weeks and I have lost count of the number of attacks i've had. They are more severe and I cant move with them and I can't see very well during the attack. I shake and sweat profusely as well. Sometimes they last about twenty or thirty minutes but I've also seen them last for an hour or two with no relief. Sometimes one a day a lot of the time three or four a day. I really feel that I can't go on sometimes, and if it wasn't for friends and family I would want to finish it all at times. There is nothing positive in this illness to hang on to. No-one believes your ill until you have an attack in front of them and after they wonder if they actually saw this woman crawling around in pain. An animal gets better treatment. Name: "lee" My grandma developed TN over nine years ago from several dental implants and root canals, we believe. She has had so much surgery and they cut her trigeminal nerve that now she has developed anesthesia dolorosa. We cannot find any treatment that works for her. She barely eats or sleeps. We have tried all anticonvulsants, antidepressants, vit b-12, pain killers, lidocaine patches, nothing works for more than a couple of days. I am so scared that this will kill her soon. Name: trish I'm not quite sure how to start. I just turned 30 and I've had tn for about 3 years. I have a 6month old son & a 13 year old daughter, I 'm a single mom. I had the surgry in 1998 to fix me. I could not handle the pain... I was pain free till dec 1999. After my surgry I've had double vision & I see lines of bevild glass, more so in the heat. I am now back on meds, and no longer able to work. My 13 year old now takes care of most of my daily tasks. This sucks! My memory is now just about gone!!!! I have trouble spelling and I can't tell you how many times I've gone to the store and left what i bought or leave my home and left things I needed, once even my shoes. I still have my pain and now I have lots of wonderful side effects to boot! any suggestions please e-mail me or let me know about people in Sacramento / Lincoln Ca with the same issues.... Name: "nonni" I started w/ what I thought was dental pain on left side of face three months ago.After three fillings & one extraction my two dentists could not understand why I was still in such pain. One suggested possible sinus problem. The episodes kept getting worse,when my employer(who is also my doctor) saw my having one of these attacks said I was not having dental pain. That was the first time I heard of TN. He referred me to a neurologist who saw me the next day (thank goodness!)He started me on Tegratol 100mg 2Xs a day w/ increase to 3Xs after 10 days.I have only been on med for 5 days w/ some relief.I still find myself taking ibuprofen when the pain starts. I have no idea if this helps but I try anything to get relief. I have to return to neurologist in one month. My concern is he did not feel the need to run any test such as MRI or CAT to rule out other possible cause. Is that normal? He did say that if I don't get relief from med in 6 months, that we would discuss surgical options.(I can't even think of still having this pain for 6 more months)I am considering seeing another MD. I'm really thankful for this site,it has answered some many question that my husband & I have had.Thank you! Name: Joan Name: candyce At first i went to an ENT dr for terrible left ear pain that comes and goes that is so bad it can knock me off my feet! The ENT Dr. put me neurontin and said see a neurologist. I did and got lots of tests, continued the same meds until he ruled out all the horrible disaeses. I still got horrible ear pains so inbetween all this testing i went to my MD who prescribed presciption strength Motrin with extra tyenol to take along with the neurontin.. stabbing, shock like pains. my neck gets stiff and it makes driving difficult. I cant let my left ear touch the pillow at night the pressure is to painful, i'm sure you'll understand. I was in ER with a terrible staff infection in the same ear two years ago. (hmmm)my mother has MS i wonder if any of things are reasons why i have it...I have been married a little over a year and was looking foward to getting pregant soon but not on these meds...i hope to ween my self off the topamax as the pain stops...to procedd with my plans...i going to look more into b-12.. i love this web site..god bless Name: "Jojo" Alternative medicine is helping this painful condition with reduction in shootings in my face by cold laser. I use a strong cold magnet on the top of my scalp where the burning is radiating. accupuncture laser reduces my carpal tunnel symptoms also. Neurologist very helpful and surgery is not necessary. Name: "blue" Two weeks ago I suffered bad pain in the right side of my face. The next day it was worsep, with stabbing and shooting like pain which made me gasp and jump. With an underlying bad ache from my ear to my chin. Over the counter painkillers didnt help. It was so bad one night that I was crying and screaming and went outside to throw things to help my frustration with this pain. I told my dr. I just had to see him straight away so on Thurs. he diagnosed with Trigeminal Neuralgia. I hadnt heard of it, and didnt worry too much until he said that the drug he was giving me was also given to treat epilepsy.I must admit I didn't ask much after that as I was in pain and in shock. When I got home I got on the internet and found this site. You can imagine how I felt after reading all the stories about TN and how bad it was etc. etc. I also downloaded information about the drug Carbamazepine - 12 pages of it and for those inerested you can find it at www.mentalhealth.com/drug/p30-t01.html. giving all the warnings, side effects, etc. That was bad enough without the pain. So I started on the drug. I had also read that "unfortunately nsaids do not help much in TN". The next day pain was still there soI got a script from my dr. for Panadeine Forte. So I was really dosed up on that. The pain stayed with me so a week later I saw another dr. who agreed with the diagnosis and said to keep up the treatment. I had read also that when on Carbamazepine, blood should be closely monitored. That wasnt being done. I read that TN was rare, about 150 in a million - I thought "that diagnosis was pretty quick". So even after reading about people's trips to the dentist etc. and the pain coming back, sometimes worse than ever, I decided to go to my dentist. She wouldnt see me for another 10 days so I quickly told her "where to go" and found a sympathetic dentist who would see me the next day. He spent about 1/2 an hour with me talking about TN and then took xrays - would you believe I had an abscess under a molar - a bad one at that. I said "I'm so glad you have found that" and his dental nurse gave me a very surprised look. Anyhow he drained the abscess and extracted the offending tooth. Since then my facial pain has gone away, the only dull ache I have is at the site of the needles and extraction. The dentist said that my pain was due to the fact that the abscess had "poisoned" my face, and he also said he was surprised that the drs. hadn't recommended a visit to the dentist and to a ENT specialist before the diagnosis and commencing my on that strong drug. I told my dr. what had happened and he said he was glad that my pain had gone, and I told him that it could have gone much sooner if he had suggested that I see a dentist. The only downer now is that you have to get of Carbamazepine slowly, so I have to take it for another week, slowly cutting down, so I still have a fuzzy head and woozy tummy. So you never know, perhaps there are some of you that could benefit from my story. So I hope that the diagnosis of TN was in fact truly incorrect. I hope that may be the case for some of you, as I really feel for you, having only had that sort of pain for 2 weeks. I don't know how you put up with it and still go on with your life. If I can help contact me at bevblue@start.com.au. Best wishes to all of you sufferers. Name: Mary My mother suffers from Atypical Facial Pain. She is 73 years old and has had it for about 8 years,the last two being the worst.She has other medical problems, but was still able to stay active. I have seen her endure alot of pain throughout her life, but this condition has changed her life. She cannot be around people because talking makes it hurt the most. She can't talk on the phone either. So she has isolated herself from everyone but her family. She has so many wonderful friends and she says all she wants is to be able to spend time with her friends again.Today I took her to have a sphenopalatine ganglion block. It didn't work. That doesn't mean it won't for someone else. We weren't suprised because nothing works. She takes a ton of neurontin and another very strong pain killer and is still in constant pain. The doctor today (neurosurgeon) basically told her there was nothing else he could do. She has tried everything else from the cream to accupuncture. Absolutely nothing gives her any relief. She has been to pain clinics and several different neurologists and nothing helps. We are now going to search for help in other cities. There has to be something that can be done! We won't give up and neither will she, although most people in her place would have, along time ago. Thanks for listening. Name: julie Name: Leslie I am 25 About 4 years ago I had a siezure at work,my first one ever .When I got to the hospital by ambulance I was confused told I was pregnate and my sinus's were packed other then that inconclusive.No reason i had a siesure well I was not pregnate.And the nuroligist I was sent to told me people just have siezures.I begged for tests to be ran.My face hurt so bad and still does.the pain is so unbearable some times i chew gum to relieve it .My upper and lower jaw line hurts my nose bone feels like if i broke it it would feel better.I often say to my husband punch me in the mouth make it stop.My dentist refered me to an oral surgeon who removed my wisdom teeth .Pain did not stop .I find my self holding my jaw open or when i lay down tring to relax it but I cant my eyes nose and face bones in general are killing me what do I do? Name: Dave L After 16 years of doctors and dentists of all kinds, I finally found relief from TN with the gamma knife procedure at Columbia-Presbyterian Hospital in New York. It took 6 months AFTER the procedure for the pain to leave completely, but I have been totally pain free for a year now. I was very skepital of doing the procedure, but after 16 years of feeling sluggish on drugs that didn't completely alleviate the pain, I was willing to try anything. I don't know if it would work as well for everyone, but I think everyone should at least look into it. Name: "zeus" this is the most terrible thing, the sensation of not only pain but that something is under the surface twisting and ripping off my face, i have no life medications have no effect there is never any relief chiropractors, dozen doctors, neurologists, 24-7 i have to wrestle this beast of a problem, valium and xanax seem to help slightly but i have to take 6 pills at a time THIS IS INSANITY Name: Kim I have been suffering with severe jaw pain on my left side since February 2000. My #19 molar has gave me nothing but trouble. I had a root canal done on the tooth over 16 years ago and then about three years ago I started having pain in my jaw and so my dentist sent me to a crown specialist and he then decided that I had a cracked root on my #19 molar. I was then scheduled for an root extraction. I thought that everything was okay, the pain was gone. Then about two years ago I started having pain in my jaw again. I would go to the dentist and they did not see anything obvious, so they would treat me for an infection and give me pain medication. Finally about after four trips to the dentist with jaw pain they recommended me to have the tooth pulled and have a bride made. I made the appointment to have the tooth pulled and they had a really hard time getting me numb on my left side. When the tooth was pulled I still had feeling and experienced alot of pain, but I just wanted to get it over with. Well, boy was I fooled. When I got home I was in so much pain, I called back to the dentist the next day and they said I probably had an dry socket. So I was treated three times for that. They finally did not know what to do so I was referred to an oral surgeon. I was treated by the oral surgeon for six months. I was diagnosed with TMJ then to Myo Fascial Pain Syndrome. They tried so many different medications on me, nothing helped and so I tried the splint. It was no use I was still hurting. By this time my stomache was so irritated from all the different medications I had to go to an gastralogist for an Endoscopy. My oral surgeon decided at this point that I had the Mayo Facial Pain Syndrome and was not responding to his treatment. Once agin I was reffered to another doctor. They sent me to a pain clinic. They also tried lots of medications even accupunture. I had a bad reaction to Neurontin they had up my dosage of the Neurontin to just 1600 MG and I could not walk. I was on the Baclofen, Elavil and just did not respond to the medication therapy. They put me on the Duragesic patch for pain, which helped but I had no quality of life. I was so over medicated. I could not function or even get out of bed or even take care of my family. This was not no kind of life!! I then asked them for the nerve block. I had my first V3 nerve block on January 9, 2001 and was PAIN FREE for six wonderful weeks. It was great NO PAIN!! I then decided to come off all the medicine since I was feeling better. I had terrible withdrawals. I thought that I would die, I was so scared. But after getting everything out of my system I started doing better. By this time I had missed alot of work and was ready to claim my life back as a wife and mother and start working again. Everything was going along too smooth and then the headaches begain. I had never had headaches so severe. I was gave Floricet, Duradrin, Imitrex and nothing helped and the worst thing of all it triggered my jaw pain again. By this time I am so terrribly discouraged, so back to the pain clinic I go. They tried another V3 nerve block and this one did not work. They told me that I had trigenminal neurigial and would have to live with it and be on medicine the rest of my life. So they put me on Tegretol and wanted me to see a Neurologist. I go and have another MRI and visit the Neurologist, he informs me that I am having migranes and he treats me for the headaches, but as far as the jaw pain goes he tells me that I do not have trigenminal neurgial but Atypical Facial Pain. He gives me Depakote, Lamictal, and Imitrex Nasal Spray and my headaches are much better now. I am currently taking Dilantin, Amitriptyline, Percocet. I am still hurting and waiting for another appointment that I have with a facial pain specialist. I hope that he can help me. I am so desperate at this point. I am living with the pain everyday and it is constant. I try to stay busy and keep to keep my mind focused of other things. I am so glad that I found this website and to know that there are others that are going through to same things I am. It helps to know someone understands! Please write me if you have any advice or suggestions. Name:Melia Name: David Sent my story to you this morning. Hope it was received. A simple "yes" reply will do. Thank you. David Name: Paula About a year ago, I took a pitbull dog for a walk. The dog jerked on my arm and then the next day, I started having severe pain in my neck radiating to the left side of my head. I've been going crazy with this pain in the left side of my head. It seems to start at the temple area and radiates to the front and back of the left side only. My left eye area, swells like a balloon. My husband can tell when I am in pain by just looking at me. So far I have had 3 MRI's, 2 CTScans, Xrays, and nothing is showing up. I could be sitting up talking to someone and then puff, the attack hits me and I'm on the floor crying with pain! It feels like a knife is stabbing the left temple. I am only 38. My doctor first thought I had an unusual temporal artertis but the specialist ruled it out immediatley because of my age. The pain got so bad over the course of a year that I even considered susicide. I am presently on Neurontin to control the pain, and it seems to be helping. I am not getting as many attacks as I usually do, but still get them. Just less frequent. Is there anyone out there that is experiencing something similar???? Please help me if you can... sweetp@sympatico.ca Name: "bumble bee" Have suffered from Atypical Neuralgia for 35 years. Started with 2 bouts of Tic-dol-a-Rue after a tooth filled at dentists. Settled in for the many years at that time. At first I thought I suffered from severe sinus infection - not so. Am female and have been married for 45 years and raised 3 children (now in 30's & 40's) have my bouts of screeming with pain (mostly in mid-night), nearly went crazy at times - found something which subsides pain - temporarily. Chewing Gum!! Often wondered how it would look for an "old foggie" to be chewing gum - especially in social occasions, but hasn't proved a problem as I will explain to people, if necessary, and I also have learned to chew almost invisibly. Was nearly laughed out of the hall when I stood up at a lecture on pain and announced that chewing gum was my solution to facial pain - but the lecturer announced that I had done the right thing, and found a personal solution. He felt it was the movement of facial muscles acting as a soothing counter to the sharp facial pain. Also, have found that arm and hand movement such as sanding of wood, knitting, sawing etc. help stifle pain. Name: Diane I first got TN when I was 34, I am now 47. TN started as a few quick pains in the face so i was sent to a dentist and exrayed, but it only got worse and worse. After 7 years of overdosing on tregtol and going crazy with pain, my doctor finally sent me to a neuro sergon and he recommended operating, I had it done because at that point I would have rather been dead than go on in the pain I was in. It is now 6 years later and it is coming back , I don't know where to go from here but I pray to God it won't get as bad as befor. I hope someday nobody has to suffer with this terrible pain. Name: Coral I started with a terrible pain in the roof of my mouth in 2/99. At first I thought I had burned it, but after 5 days I knew that it was more. I called my dentist and he saw me right away and diagnosed that I shingles (herpes zoester) in my mouth. Although no lessions had yet broken out he sent me to my family doctor who prescribed pain pills for that day. I called my doctor the next day because the pain had become so unbearable. He then sent me to a dermatolgist he he saw me that day. Buy then I lessions on entire right side of the inside my mouth. The doctor then diagnosed Ramsey Hunt Syndrome which seen in less than 1% of patients. Most doctors study it briefly but will never see a case. As the month went on my life was consumed with pain and a terrible burning. The dermatolgist then sent me to a doctor for pain management. We tried various procedures, nerve blocks, glycerol injections and I only became worse. By this time they had decided I also had TN. I then went to Pittsburgh for a morphine pump but I was allergic to morphine.(thank goodness found out later it would not have made a difference. I then was sent for MVD, but because of the Post Herpetic Neuralgia this would not help me. I was offered the DREZ. I could not bring myself to such a horrible operation. I lived on with the pain and all Drugs you can imagine. I was a walking zombie. I then started do alot of research on the internet. I found a Dr. in New York who said I sounded like a candidate for Motor Cortex Stimulation. I then did alot of research on this and found a Dr. in Toledo, OH who did this kind of surgery. I don't want scare anyone about this surgery so I will try to explain it best that I can. You first of MRI'S at least 3 before they do the procedure so they can map out your brain. You are then put to sleep and your scull is opened to only the gray matter, they do not enter into your brain. Electrodes are placed on the opposite side of your problem area and by computer they can tell what nerves are involved in causing you pain. After this surgery they leave the leads to the electrodes coming out of your scull for a few days so that they can adjust the stimulator up or down for your pain. If you have relief then 4 days later they insert the stimulator either in your side or shoulder. Thank god from above it helped me by at least 50% or more for relief. I am still bothered by wind and someone other than myself touching my face. Very sensitive. But I can get through the day without crying. It was worth an almost 2 year wait for relief. I am not saying this is the answer for everyone but it could be. Also, I am off all meds such as Tegretol and Neurontin which I know made me completely stupid. I still have problems with my memory but I really believe that this is from nerve damage. Good luck to all of you I hope to read some good news on this site soon. If I can be of any help or just to be there to talk please feel free to contact me. Coral Name: "reeter" I have had facial pain for 20 years. no doctor ever seemed tol take me seriously. the pain really got worse after flossing my teeth. i told dentists about this and they looked perplexed. i have suffered with this for 20 years. recently a doctor finally referred me to a neurologist. He ordered an MRI of my brain. he said he has never seen anyone below age 50 with this condition, so he wanted to rule out MS. my MRI was normal. he put me on tegretol. it seemed to work good for several weeks, then my upper lip became numb, i was scared, thinking I was having a stroke. my doctor thought it was the trigeminal and started me on Baclofen, to help supplement the tegretol. I am afraid of the side effects of tegretol. i am about ready to try accupuncture. i need support and help with this. on windy days, it hurts my face to go outside. Name: Rossanna After getting X-rays at the dentist office, my very caring dentist had to admit that my pain problem was probably not due to my teeth. I thought it was a bad case of TMJ. Although I've suffered from a painful jaw and clicking, I never officially addressed the problem. Monthly facial massages from my chiropractor and alot of tylenol was the extent of my treatment. aA couple of days ago I drove myself to the emergency room leaving my two little ones with my mother. I was crying while speaking to my husband on the cell phone...taking breaks during the moments I was too stff to speak. The ER doc. took X-rays and ruled out sinus troubles. He told me that it sounds like Tic Douleureuse or TN. I've spent the weekend in pain and on vicadin and on the internet. After reading about 5 minutes of the personal stories on this wonderful site I knew I had TN. First thing tommarrow morning (Monday May 21,01) I'm calling three diffent acupunturists to see if any have experience treating TN. Then, I'm getting a referral to a neuroligist and start the process that all of you good people must know so well. I have to have faith, my children are much too young for me to be in too much pain to read to them and teach them. My reason for staying at home with them is to teach them myself, besides I teach language on the side to preschoolers. The stories I read were frightening and as of now I believe that my life will take a very hard turn, but I can't let it ruin me. Please, refer anyone you know in the S.F. bay area who has signifigantly treated this terrible disease. Thank you. Name: JOHN I AM RE-EXPERIENCING FACIAL PAIN AFTER THE MOST RECENT GAMMA KNIFE ISSUE ABOUT 4 MONTHS AGO. PRIOR TO THAT I TRIED TWO JENETTA PROCEEDURES. THE FIRST ONE CAUSED ME TO HAVE A STROKE AND THE SECOND CAUSED MENNEGITUS. THIS CURRENT PAIN IS NOT DEBILITATING, YET, BUT IT IS CERTAINLY IRRITATING. I WISH I HAD TRIED GAMMA KNIFE SURGERY FIRST PRIOR TO THE JENETTA S. THE JENETTAS PROVIDED A LOT OF BRAIN DAMAGE THAT IS EVIDENT ON MRI'S. DR. YOUNG SAYS THAT THE DAMAGE IS NOW WHAT IS CAUSING THE DISCOMFORT AND STATED THAT HE MAY NOW HAVE TO IRRADIATE MY THALMUS, A PROCEEDURE I DO NOT WANT. ANY NEW IDEAS? Name: B I have anesthesia dolorosa as the result of surgery to remove a 4.5 cm Acoustic Neuroma. I went to the clinic in Pittsburgh and was told there was no surgery to relieve my type of pain. I have tried all the drugs listed above over the past 7 years. Baclofen took care of the typical pain for the first 3 years but left me with a horrible case of the "shakes". The atypical pain started 3 years ago. My doctors have tried various combinations of drugs for these two very different pains. 5 weeks ago, I was taking 3200 mg. of Neurontin and 30 mg. of Baclofen daily at 3 hour intervals. The combination offered relief from the pain - the burning pain was always there and the stabbing pain would hit me at odd times. I could never figure out what triggered the pain. My family doctor suggested I start taking Paxil. Why not? The first two weeks I noticed nothing except a slight change in my motivation. I am a fairly hyper person, always having to "do" something. Suddenly I was content to sit for hours knitting, not caring about things I should have been doing. Here I am at the start of the 5th week and I am delighted to say it has been the best thing I have done for my facial pains. I am only taking 2400 mg. of Neurontin (800 mg. every 6 hrs.)and 20 mg. of Paxil once a day. I no longer need to take Baclofen. I now have a normal sleeping pattern and don't require an afternoon nap. My motivation is slowly returning. But, best of all is the pain control. It is consistent with no more breakthrough pains. Compared to the past, I am basically pain free now. I strongly urge any of you out there who are willing to try this addition to your pain control to investigate it further. Beware though, alcohol and Paxil are NOT a good mix. I feel skipping my 2 ocassional beers is a small sacrifice! :) It took me a long time, various awful drugs, some idiot doctors, tons of prayers and years of patience to figure this out. I am so thankful and want to try to spread the word. Thanks! Name: Elaine Dear fellow TN sufferers, my heart bleeds for you!! Sorry for the long winded posting, but I’m hoping I can help. I have had Atypical Trigeminal Neuralgia for 3 years. However, I am almost pain free now, even though I believe I still have the condition, but am no longer taking Tegretol or any of the other traditional meds that are typically prescribed for this disorder. I have found my salvage in B-12 vitamins at 1500 mcg a day. After reading some of your postings, I think most of us have gone through very similar experiences. Seeing numerous doctors, dentists, specialists, etc. and trying all kinds of medications. After experiencing pain for the first time in May of 1998, I couldn’t find relieve or proper diagnosis for almost 9 months. It was pure hell and the worst time of my life! I often wished during those times that I was dead!! My husband tried to be as understanding as he could, but it was impossible for him to relate to the severity of my pain. After finally being diagnosed by a neurologist, my drug of choice became Tegretol (I tried other meds like codeine, over-counter, etc. but nothing else worked). This was my groove for the first two years of my TN period. The short-term side effects bothered me for a while, but then pretty much subsided. What was worse is that the long-term effects really scared me, liver damage, etc. You see I was only 29 years old when I got TN. I couldn’t imagine another 40 years or so of Tegretol…what would that to my long-term health? I also want to have kids, BUT Tegretol, Neurotin and just about everything else is nowhere near safe for trying to conceive. So during the past year on the advice of my neurologist, I started trying to dose off of Tegretol, very very slowly. It took me almost 6 months to go down from 1200 mg to 600 mg a day. At that point, a little over half a year ago, I was staring to feel optimistic and I started taking pre-natal vitamins and folic acid (400 mg a day). But shortly after that I kind of hit a wall. It was difficult for me to continue dosing off. I would experience break-through pain each time I tried to dose down (this was the case with all the previous times as well, but after grinning and bearing it for a while my body would get used to the lower dosage and I would be almost pain free again). This time it was different. Shortly after buying the book “Striking Back” which is advertised on this web site, I read it cover to cover. I knew I had to find an alternative to Tegretol if I was ever to have kids. I ruled out any invasive or surgical procedures. Unless and when if it ever got worse, I wasn’t having anyone drill through my head on the chance that it just might work for a non-fatal condition. I went to see one of the best specialists in the country on TN (quoted all throughout that book), as he happened to live in my area. I hate to say this, but that was a HUGE disappointment. You can be sure he charged me a bundle, but he hardly spent any time with me, and confirmed that based on my previous medical history I have TN…dah! The only safe way for me to try conceiving he said was to have surgery and he was all ready to refer me to those other doctors who could charge me some more. NO THANKS I said, I’ll think about it. I continued reading that book, but now focused on Alternative Therapies. I wasn’t sure about hypnosis or acupuncture…but I was starting to consider it. One thing that seemed pretty easy to try though was Vitamin B-12, it certainly couldn’t hurt. I started taking 1500 mcg of Vitamin B-12 a day (and still do). I did some research on the Internet and found that there appears to be a connection between Vitamin B-12 and the Nervous system. There are some theories that deficiencies of this vitamin in your system can lead to the loss and destruction of myelin!! However, there are no solid theories or research to prove that taking B-12 vitamins can restore the myelin or not? It was worth a shot, and guess what…it worked!! Taking this Vitamin allowed me to completely dose off Tegretol (after a few failed efforts at first…have to be paient). I have been almost pain-free for 4 months now and haven’t taken any Tegretol. I thank God every day for this miracle. The fact is that I still get some pain every now then (no where as bad as it used to be and it passes on its own after a while). This actually makes me feel better because it confirms that I still have this strange condition with no clear cause or treatment, and that it has not gone into remission (but rather I have found for myself a cure, I hope). I am 32 years old now and happy to say that as a result of this last development, my husband and I have been able to start trying to conceive for the last couple of months. Needless to say, I don’t know if this will work for me forever, or if it will work for any of you. I have my own additional theories of what might have contributed to the cause and what can also make it better: my only wisdom tooth pulled was where I experienced pain, my stress level and happiness had improved during the last year (moved back to CA from NC closer to family, friends and warm/sunny weather), usually tend to get depressed easily but have been better lately, I don’t eat very healthy (usually lack in sleep and don’t exercise). Despite everything, the Vitamin B-12s seemed to have done the trick, at least for now. I hope that it might work for some of you, which is why I shared my story. And for others, that you may find help in some other way but still be rid of this horrible pain. For I remember what chronic, non-stop TN pain feels like, and there aren’t many things that are worse. Good luck to you all!! Name: Dawn Hello, my name is Dawn. I am 24 years old. I have Trigeminal Neuralgia. This all began when: I went to the Dentist in Dec of 2000 because I had a broken filling in one of my bottom molars on the left side. He told me that I should also have two other fillings replaced because they were getting very old and would most likely break as well. When he began to remove the filling in my top right molar, he could not get it to numb. He gave me 3 shots in the corner of my mouth and 9 right in that gum area. It only numbed enough for me to not yell out in pain. I could still feel it. It was a horrible experience. After he filled it, I started having pains on the left side of my mouth. I knew that he had ground down too much of the tooth and had to go back to have it refilled in Jan of 2001. He had also left a space there. This time he had to give me the 3 shots in the corner of my mouth and 12 in my gum area. A few days later, I could not drink anything cold without having a horrible lancing pain shoot through the left side of my mouth. It became more frequent and I could not eat at all without being engulfed in pain on the left side of my head and face. It felt like someone was slicing open my gums and the pains shot up through my cheek to my temple and down my jaw. I went back to the dentist thinking perhaps that tooth had become abcessed. He x-rayed the left side and tapped on my teeth but there was no sign of any problem or infection. He said he could not clearly see my sinus cavity and that I may have an infection. He put me on Amoxicillan. I was no better so I got an appnt with my internist. I saw her alternate instead. He put me on decongestents, a nasal inhaler and gave me Darvocet for the pain. I went through all of the Darvocet in one day. I paged the nurse repeatedly from work because the pain was so bad,it was difficult to function. They called in a prescription for Naproxen (an anti-inflamatory pain killer) but it had no effect at all. I continued to go to work each day with the intense pain, thinking I was overreacting. One day it got so bad I could not longer talk and could barely move. One of my coworkers drove me to the ER. I told ER, with great difficulty, everything that had occurred; they took several x-rays of my skull. They found no sign of infection whatsoever and told me they suspected it was a nerve causing the problem. They gave me Lortab. It did not even dull the pain. I went back to see my doctor. I explained my situation and all that had happened up to that point. She was positive I had TN. She put me on Effexor & Tegretol, then sent me to a neurologist. After an MRI and several other tests were done, the neurologist confirmed my doctor's diagnosis. The neurologist increased my dose of Tegretol and prescribed a steroid dosepack plus Amitriptoline. The Tegretol seemed to have helped marginally, but the Amitriptoline just gave me horrible side effects. I went back on the Effexor. The neurologist said she had nothing for my pain so my reg doctor referred me to a pain management clinic. They (anesthesiologists) performed a procedure called a stellate ganglion block. This is an injection through the front part of the neck pass the trachea that numbs part of the sympathetic nerve stem near the spine. This procedure was performed at a Surgical Care Facility. These 3 doctors told me that in most cases the treatment works very well; 3 to 5 shots should give relief. After my first three shots I cried because the pain was gone and it had been almost 4 months that I had been in almost constant agony. But, the relief only lasted a few days. My insurance stop approving the blocks last week, so I am back in pain again. It is so horrible - sometimes I feel like I am going to die. At this point I am without any kind of relief; the Tegretol is no longer having any effect at all. I was prescribed Neurontin last week and given Hydrocodone for the pain. Painkillers only slightly dull it and are far from effective. Without any hope or answers this week, I decided to see a specialist. He was suppose to be an authority on dental/medical problems. I went to him only to review & evaluate my medical/dental records - hoping to get some answers & advice. All he did was take a new xray and tell me that I needed a root canal; he would not answer any of my questions or view my records. He was horribly rude as well and would not show me where the supposed sign of infection was. He immediately tried to set me up with an appt for a root canal for the next day with one of his friend endodontist. I left there in tears and put a stop payment on the check that I had written him ($759). I won't pay for a visit where I did not get the service I requested. I felt so hopeless. I turned back to pain managment to see if a block had been approved yet. I was told the insurance had approved something called a TENS unit that the pain clinic prescribed. It works like a pacemaker. It has little pads you stick on your face that send electrical impulses to your nerves and tells them what they should be doing. I am hoping that it will work. I should be getting fitted for it this week. They also informed me that my insurance had approved another block and I am going in for it tomorrow. Perhaps relief is on the way yet! How TENS unit controls pain - (This unit is about the size of a small cell phone) 1st Theory: The TENS unit works on something called the "gate control theory". The gate is where pain & non-pain impulses are sent to the brain from the local nervous system. These pulses travel through the cutaneous nerves to the deeper afferent nerves & then to the spinal cord & brain. The gates prevent the brain from receiving too much information too quickly. Since the same nerve cannot carry a pain impulse & a non-pain impulse simultaneously, the stronger, non-pain impulse (from the TENS device) "controls the gate." 2nd Theory: TENS stimulation encourages the body to produce natural painkillers called endorphins. These chemicals interact with receptors, blocking the perception of pain, similar to how the drug morphine works, but without the side effects associated with it. Name: Michelle My story started off with a tease. The summer of 2000 I got some "tooth pain" but my dentist couldn't find anything wrong. He guessed TN. Eventually my doctor sent me to a neurolagist. At that time the pain was very infrequent. Another dentist couldn't find anything wrong. I still was unconvinced and didn't fill out my prescription for Neurontin. For a month starting in January, I was completely pain free. I figured that was it. What a tease. I think I was hit by ten freight trains. The pain was so bad when it came back that I couldn't even move. Talking to my young children was agony. The more I tried to do the worse it got. My neurologist was obviously going by my earlier symtoms and only prescribed me 100mg of Neurontin 3 times a day. Useless. Finally at 300mg 3 times a day my pain was relieved...for a month. I increased it steadily from there on till I reached 2700mg a day with little to no relief. I have now started 500mg of Tegretol a day as well and am pretty much pain free. I am hoping I will be able to start dropping the Neurontin dose now. I should also add that I tried a chiropractor and that did nothing at all for me. I am now planning for surgery(microvascular decompression surgery). For now I am going to enjoy the relief and hope that the pain stays away for a long time...or better yet forever. Name: sophie I have run the gammet with this pain. I have been suffering on the left side for over 20 years now. J Just recently I dislocated the rt jaw, now both are out of place. I have AD and that is a real killer. I lost my job over this and I am nearly housebound because all the elements affect it.. If anyone who can relate would like to write to me, I would appreciate it. I feel I need to make friends with people who can really understand what I am talking about. Name: shlomit HI all of you angel's I must say first to anyone whos suffer from this dieasese that he/she need to hang it on and don't let it get too much into your life!!! so,I am 22 and i must share with you my feelings: At 20/7/98 i was having a car accident that caused me a sharp pain in the eye and some tears, after that day my face begain to be burnning up I felt every area that the trigeminal nerve goes to,and the usless doctor couldn't help me undrestand what is wrong with me. I have been oing some research of my own and first ifound you nice pepole in which i send you all my love and blessing and cure that you wish,eventualy i found out that there is a test which is called "trigeminal evocked potentials" in the test it was said that the 5 nerve has been hurt. The doctor's offerd me to take all this kind of anlgetics and tegretol and freind but i didn't take it because: "I am a student for acupuncture and i took a cours for "western medicin" ,pay a good attention all of you L A D I E S!!! "THE TEGRETOL IS DANGEROUS FOR ALL THE WOMEN IN WHICH ARE ABOUT TO GET PREGNENT,THIS MEDICIN CAN CAUSE A BAD INFLUEBCE TO THE CHILD ,IN WHICH HIS DEVELOPMENT IS HURT" I am no doctor but please do a favour yourself and ask your doctor about all the bad influnce this medicin can cause!!! My thesis for my study is about this issue,I would like you to help with that if you wish ,I am trying to find a connection between the chinese midicin and this syndrom. Pleas if anyone would like to share with me his feelings and to tell me how this thing started ,I would realy apriciate this,and may be I can help you. to all of you hang it on,i do know what pain you are going thruogh beacause i am suffering every day from this pain but i am trying not to deticat it all my life. HAVE A BEUTIFUL LIFE!!! my e-mail is :shlomitbibi@hotmail.com Name: "Bobbie" My story began 10 years ago with a fast onset of terrible pain. Iwent to the G.P., general dentist, oral surgeon, ENT, chiropractor, neurologist, neurosurgeon. It was the ENT professional who first diagnosed this after I had had the "usual" treatment of root canal and my dental fillings all changed to composites. After the diagnosis I was sent to the neurologist and on to the neurosurgeon who seemed gleeful to see me. When I balked at the first consultattion, he assured me I "would be back." I have wandered through the usual maze of drug therapy, staggering, falling, and feeling in a daze. I have listened to others who swore by acupuncture (it did nothing for me); crystal therapy (yes, I tried that too!); chiropractic manuevers (made it worse), and even having the offending nerve cut by an oral surgeon (permanent numbness but pain returned, of course). I have been depressed, given antidepressants, been more depressed, considered ending it all. But through it all I have worked! Have to. How? It has been an absolute heroic event. Finally, this past fall someone tried to convince me to try a "specialized chiropractic treatment" - upper cervical. Sure, I thought. Another voo-doo thing. I was sent a tape to listen to. The tape sat on my desk for months. One day I thought I would listen to it before I threw it out. Listened to it and thought, this is absurd.I listened to it several times and then thought, well, I'll try one more shot at voo-doo. Finding one of these specialized people was hard. I did careful research, finally calling the national organization and spending a long time on the phone with the person in charge. I came away with two names of certified practitioners. I made an appointment and cancelled. Waited another few months. The pain was bad. Made another appointment and kept it. The specialist told me about the atlas bone in my spine. I was unconvinced, but now what did I have to lose? It was one more try with witchcraft or on to surgery. So, I gave it a try. I got better. I was skeptical. I am a tough patient. Since I started, I have had very good success with this procedure. I am now down -- way down on my meds. I can now function -- and eat -- and talk. I am still unwilling to say unequivocally that what I am doing will work for anyone else, but so far it has given me relief. At least the pain is gone --- for now. Name: lisa four years ago i started getting these incredible pains in the side of my face. I was quickly sent to a neruologist who said T.N. he suggested six months on the medication and one month off to see what happens. well they didnt come back until two months ago and they are making up for lost time. the pain is intolerable. the medication is making me so "loopy" that i had to close my daycare which makes finances bad and taking care of my own three children a challenge. the emotional stress this causes them is breaking my heart. my heart is heavy, if it wasnt for God i would be lost. any inspiration is greatly appreciated, someone to go through this with that understands the pain that will not think that my preoccupation with this is nagging. thank you for reading my story and responding. lisa Name: Danielle It all started in 1997 when I went in to see the dentist for a routine check-up. I had 5 cavities. My dentist gave me novicaine before she started drilling on one of the teeth. For some reason she couldn't anesthisize me. So after 3 shots of novicaine and two seperate visits of her trying to numb one tooth up, I decided that if the pain were going to be this bad, I needed to be put out (by the way, my dentist kept blaming me for not getting numb, as if it were my fault) ANyway, to make a long story short, I went to the new dentist who told me that I needed a root canal on that tooth and that I didn't need to be be put out. Mind you, the former dentist was drilling on an root canal with NO NOVICAINE. Talk about pain and trauma. So after the root canal the new dentist filled the 4 cavities in the course of two months. After one specific visit, I left the doctors office in pain. After the novicaine wore off I experienced more pain in the tooth he drilled. I kept calling my dentist who each time told me that "some teeth are just more sensitive than others" and then kept on telling me to take advil every 4 hours. Anyway, needless to say, the pain never went away, although it did change from localized tooth pain to facial and head pain. I dtarted going to different Dr.'s - neurologists, facial pain specialists, etc. Everyone seemed to think tension headaches and nobody would admit that the dental work had anything to do with it. The Dr.'s would recommend that I see a therapist saying the it was psychosematic. I'm sorry, but I know real pain when I feel it. Anyway I went from Dr. to Dr. and on medication to medication. I feel like I;ve tried almost eveything and have no hope left. Most recently I went to a Pain Mgmt. specialist who diagnosed atypical facial pain, which is basicaly like saying "well we can try some possible things, but we really have idea what you have or how to treat it" I mean, I'm on a huge city with some of the best Doctors and I can't get any help or answers. I feel like I'm gonna live with this forever. No one understands. I CANNOT live with this anymore. Name: Amy I WAS TOLD I HAVE TRIGEMINAL NEURALGIA LAST WEEK AFTER 3 MONTHS OF UNBELIEVABLE PAIN. I didn't know what it was so I started searching the net. I found a support email loop and this note is a response to my question for more information. I am in too much pain to re-write it for here so I just cut and paste..sorry if it's confusing. Amy I am a little long winded so please forgive my rambling and the length of the response. It reads a bit like a novel... I am really not a whinner or complainer and am a really positive upbeat person... It's just that I feel like no one really understands what it's like to be in CONSTANT PAIN and they really don't want to hear it! Ya know what I mean? I try not to complain because I know I don't need to hear it again either if you know what I mean...? My goal is to research and get all the information I can so I can be proactive in my approach to control what I have the power to. I hate being at the mercy of a Doctor and not be an active part of the process. FRAN WRITES: "Amy: In my experienceaTN pain is shooting pain up the side of the face starting in the lower cheek or around the mouth and disappearing into the scalp." EXACTLY!!! It starts at the site where the tooth was extracted and goes straight up to my eyebrow. OUCH! "Did the tooth extractions and root canal come first or were they done in an effort to stop the pain.?" The pain started on and off about last summer but became constant in Dec. The dentist said the tooth was fine last summer but may be dying or die in the future... I suffered on and off for the next several months. I went to see the Dentist Dec 29th when I couldn't stand it anymore and he wasn't positive it needed a root canal yet but saw "some graying" in the xray. That and the symptoms made him determine that I needed a root canal. After that day I started getting unbelieveable "electric shocks" up my face from the tooth. It was like I was being electrocuted in my face. They would come out of no where. It was awful. I couldn't wait for the root canal which I had Jan 15th. I didn't have any more of those kinds of shocks after the root canal but I did get dry socket. After about 10 days of daily packing the dry socket the pain settled down for about 4 days then came back in waves. Worse at night. I thought it was still dry socket but the dentist said the skin had covered over and he didn't understand. His only theory was that a bone chip was floating around under the skin and was irritating the nerve. He said he could dig around for it or it could work it's way out on it's own. I opted for the latter. I picked up a partial on the Mar 23rd which is a little uncomfortable to wear. (Kind of feels like I need to floss all the time.) I noticed that when I don't wear it the pain is worse. I think it's because the nerve must be near the surface and my tongue touches it. About a week later I was back in his chair begging for an xray. He still didn't see anything and thought it might be TN so he referred me to my PCP. My PCP suspects that it is TN and put me on the Neurontin. He said that opening it up would just make it worse if it was TN. JET WRITES: "Have you talked with your dr if it would be wise to get an appointment with a neurologist to confirm the diagnoses?" I have not had an appointment with a Neurologist in several months but see one for migraine headaches. A little background: I've been suffering with severe (from 3 to 20 per month) migraines for about 2 years. They started getting really bad about a year after my last child was born. Before that I only had really bad ones maybe 2x per year (and the first 3 months of every pregnancy). About a year ago I started seeing a general neurologist for the headaches..after trying the newest meds for migraines unsuccessfully we tried a few blood pressure meds to control them. To no avail. I felt like an experiment to him so I called my PCP who referred me to a Headache specialist in the next largest city about 1 hr away. He has put me on a drug called Dextroanphedamine (Dextrostat) to control the headaches. It has been somewhat effective. I only get 3 or 4 a month now where I was getting 3-4 per week before. I was on a terrible rebound cycle when I first went to him because of all the analgesics I was taking to control the pain (I don't respond at all to Imitrex type meds). I had to go through a week of withdrawals and give myself shots of DHE 3x per day (dihydroergotomine, it's the med that was used for migraines before Imitrex came on the market) to get off all the pain killers. The Dr originally wanted to hospitalize me for 5 days with a DHE IV but couldn't get a bed in the hospital so I had to go it at home. I thought that was a little extreme at first but after the 2nd day at home I realized why he hospitalizes people to do this...!*#! Can you believe you can become addicted to Advil and Tylenol? I guess I was (along with Darvocet, Demerol and Fironol). The first week was horrible but I got off the rebound cycle. Now I'm worried that I'll start it all over because I'm taking something for this pain just about every four hours for the last several months. Anyone else have this happen? SHANNON WRITES: "I would suggest that you make an appointment with a Neurologist and also a pain management doctor. The Neurologist will be able to give you an accurate dx and from there they will only give you the anti seizure medications. That's why I say it's important to make an appointment with a pain management doctor for pain medications. If you call your PCP ask them if they can refer you to one" About a year ago I started having sharp neck pain and it would trigger a sudden migraine. After about 6 months of complaining I had a Cat Scan and MRI and both confirmed that I have a herniated disc in my neck. As I mentioned above, I'm seeing a Neurologist plus I've been going to a pain management clinic for spinal block shots. I've been twice for the shots. They have been marginally effective but I'll take anything I can get right now. My Neurologist is an older Dr and is very skeptical of some of the new treatments. He was against me going for the CT and MRI because he felt that there was nothing that could be done even if they did find a herniation (He also has a real problem with overuse of technology and Dr's not using good old fashioned brain power... too much money being wasted on unnecessary tests is his complaint.. ie. the reason it took 6 months to get the CT and MRI). My PCP was surprised at that opinion and was the one who referred me for the tests and ultimately to the Pain Mgt clinic. I'm not so sure I should go back to the current Neurologist but he is the tops in the area for Migraines. Perhaps finding the TN will have some connection to the migraines or shed some light on it for him. I don't know what to do there. I do have email contact with him so maybe I will throw it at him and see what he has to say before making another appointment (although last time I emailed him he wanted to see me and I didn't get the referral yet for another appointment. HMO's, argh....!!! Don't get me started! Anyway, I still owe him copays for the last 6 appointments and don't have it so I hesitate to try to make another appt). His years of experience is what I think is valuable even if he doesn't agree with some of the methods I'm using for pain management. Maybe I'm just nervous about changing Dr's again. Anyway.. back to your originally question/suggestion: My PCP is great about giving me the pain meds, no questions asked. (I've been seeing him for about 6 years and we've really been able to communicate and connect; if that makes any sense...?? I hate it when you are talking to a DR and they are mentally already with the next patient! It helps that we met outside of the medical setting and I became friends with him and his wife before he became my Dr. I was their banker.) He realizes that I am not dependent on the drugs except when in pain. He knows that I've had bottles of strong pain meds for years that I don't take unless I need them. Some of his partners in the office are more cautious so I have to be sure to talk directly to him when I need refills.) He even gave me 100 mg pills of Demerol (60 pills!) for the headaches to take at home when the pain gets out of control so I don't have to keep going to the ER for shots. The Neurologist has me on the Dextrostat for control and DHE for pain management of the headaches but it isn't really effective when I'm in a full blown migraine. He also gave me a sleeping pill (Ambien.. they are wonderful. No morning grogginess like I get from OTC sleep aids) so I can go to sleep at night (the Dextrostat is an anphedamine and keeps me awake.) I feel like I'm always taking a drug. Drugs during the day, drugs to go to sleep... ahhhhh. It worries me to be taking so much stuff. Now the Neurontin too... I don't know. I just want to be OUT OF PAIN!!! If it's not one kind of pain, it's another... I've been thinking about the last 15 years of facial pain. I was diagnosed with TMJ about 15 years ago and have "killed" 4 teeth on the left side of my jaw due to grinding in my sleep. That dentist did 3 root canals over a three year period that took 3 months each (due to extreme pain and inability to keep my mouth open more than about 10 min each visit). I had one extraction due to "a hairline fracture in the root" after a 3 month attempted root canal. I'll never forget that pain. I was on so much codine that the pharmacy wouldn't refill my scripts anymore. That's when I told him to pull it.. one of the roots broke off in my jaw while he was pulling it so he concluded that it was a hairline fracture in the root. That's why the root canal wasn't successful. My dentist told me that I would go through cycles of pain over the years depending on the amount of stress I was under. He was a terrible womanizer and attributed it at the time to sexual frustration due to the fact that I was a single adult and a Christian so I wasn't sexually active. I was offended with him for being such a sexist but there was some truth to it (not that I ever let him know he was right). He gave me a splint to wear at night (which I ground holes through) that did help settle it down. I got married about 3 years later and the TMJ did settle down so much so that I stopped wearing the splint for a couple years until I started having pregnancy and infertility problems. Then it was as bad as ever. Now I wonder if the problem wasn't the TMJ at all but TN or a combo of the two. I also had a front tooth die when I was 15 years old totally out of the blue.. no injury or anything. I had a root canal (by the same womanizing dentist) and about a year later I got an abcess way up in my gum above the root canal tooth and had to have surgery to remove it. I had never experienced such pain until 10 years later when I was going through the worst of the TMJ and long root canal's. Well, I'll stop now.. Are you still breathing through all that history...??? LOL... Hope I haven't depressed you! That's just my story... Perhaps some of you have been through similar stuff. I've read on the board people who have been through MUCH WORSE so I'm not feeling sorry for myself. I just want to find the answers quickly... I know, I know... sometimes there are no quick fixes, right? Blessings to all you are suffering.. May you find peace in your minds and relief from your pain soon...!! Amy A 40 Year old mother of two toddlers and a wife to a WONDERFUL husband who is soooo understanding and patient. Name: SKUEHNER HELLO EVERYONE GLAD TO SEE A SITE THAT WOULD HAVE BEEN SOOOOOO HELPFUL TO ME YEARS AGO. YOU SEE , THEY THOUGHT I WAS GOING CRAZY. FIRST OF ALL IT WAS ALL A NIGHTMARE. I STARTED BREAKING OUT IN WHEALTS ON MY SIDES UP THE NERVES AND THEN I STARTED SHAKING. THEN I STARTED CRYING. CRYING ALL THE TIME. THEN MY THROAT SHUT OFF AND THE HOSPITAL GAVE ME TOO MUCH EPHINEPHRINE AND THEY WHEELED ME OUT THE DOOR TO MY CAR. I WENT TO A DR AND HE SAID I WASN'T HAPPY IN MY MARRIAGE. THEN HE WANTED TO PLACE ME ON PROZAC. I BOUGHT IT AND THEN WENT HOME AND LOOKED AT IT AND SAID THIS IS NOT THE ANSWER. I AM SICK. I KEPT LOOSING WEIGHT AND I WAS SOOOOO MISERABLE. PRIOR TO ALL OF THIS ABOUT A MONTH I HAD SEVERE BACKPAIN,LOWER, A BACK DR. PUT ME ON SOME MACHINE AND IT MADE ME SICK AND THEN THEY GAVE ME THE PILL ANSAID. IT MADE ME REAL SICK. THEN I HAD A TERRIBLE BOUT WITH DIAREAHHA AND VOMITING. I WOKE UP ONE MORNING AND MY WHOLE BODY WENT CRAZY. I HAD SEVERE PAIN IN THE LEFT EYE AND MY HEAD WAS SO FUZZY THAT I DIDN'T KNOW WHERE I WAS. I DIDN'T KNOW TO CALL ANYONE. SO FOR DAYS I REMAINED THIS WAY. THEN THE HEAD CLEARED UP AND THE FACIAL TWITCHING SHOWED UP. THE CRYING STARTED. I KEPT WRITING THINGS DOWN BUT THE DOCTORS JUST SHOOK THEIR HEADS JUST SURE THAT I WAS A NUT CASE. SO I WENT TO AN ALERGIST AND HE GAVE ME AN ALERGY TEST WHICH MADE ME WORSE. I WENT TO CLEVELAND CLINIC AND THEY SENT ME TO THE PSYCHIATRIST. OH WELL. YOU SEE THIS WAS A DIRECT RESULT OF THE NO SLEEP FOR 3 MONTHS AND I MEAN NO SLEEP. I WAS REALLY OUT OF IT BY THIS TIME AND DIDN'T LIKE ANYONE OR ANYTHING. THE ALLERGIST GAVE ME ATARAX AND I GOT SO HYPER AND I COULDN'T SETTLE DOWN. ANOTHER DR. GAVE ME SLEEPING PILLS AND NERVE PILLS AND NOTHING WORKED FOR TWO WEEKS SO I THREW THEM ALL AWAY AND ASKED A DR. TO FIND OUT WHAT WAS WRONG WITH ME. I COULDN'T GET A DR. TO TREAT ME. SO , I CALLED UP MY HEART DR. AND HE PUT ME ON STROIDS AND MOST OF THE SYMPTOMS HALTED AND IT TOOK ME THREE YEARS TO GET MY LIFE BACK TOGETHER. MY CHILDREN AND GRANDCHILDREN ALL RAN FROM ME AND EVEN MY HUSBAND BUT GOD BLESS HIM HE IS STILL AROUND AND HE TURNED OUT TO BE MY BEST FRIEND. I HAD A REAL HARD TIME GETTING OFF OF THE STEROIDS MY SYMPTOMS REAPPEARED EVERY TIME. THE ONLY ONE WHO WOULD TREAT ME WAS MY HEART DR. AND ONE DAY I LOOKED AT HIM AND ASKED COULD I SEE A DR. MAYBE AT OHIO STATE THAT WOULD DO SOME RESEARCH ON ME. HE GOT UP AND MADE AN APPOINTMENT WITH DR. CLARK ANDERSON. HE IS A PROFESSOR OF IMMUNOLOGY. HE LOOKED AT ME FOR 15 MINUTES AND SAID I HAD ANGIA ADEMIA AND SAID HE WOULD GET ME OUT OF THIS BUBBLE I HAD BEEN IN. HE PRESCRIBED TWO ALLEGRA A DAY AT 60 MILLIGRAMS PER CAPSULE. GUESS WHAT IT WORKED. RECENTLY MY BLOOD PRESSURE WENT UP AND I WENT OFF THE ALLEGRA BECAUSE I THOUGHT I WAS TAKING TOO MANY PILLS. HERE THE WHEALTS STARTED COMING UP MY NERVES AGAIN AND MY FACE STARTED TWITCHING AGAIN SO I WENT BACK ON THE ALLEGRA AND NO TWITCHING. I WAS 43 WHEN THAT STARTED AND I AM NOW 55. I NEVER WANT TO LIVE THAT NIGHTMARE AGAIN. WHAT HAPPENED TO ME I DON'T KNOW BUT I KNOW WHAT WORKS AND WHAT DOESN'T. THANK YOU AND YOU AREN'T CRAZY YOU JUST NEED THE RIGHT DOCTOR. RUN FROM THE WRONG ONE WHEN THEY SHAKE THEIR HEADS AND GIVE YOU A SEDATIVE. Name: Joy I got my TN by a not so typical reason. I firmly believe it was because of a wisdom tooth digging into the back of my jaw area. My dentist had told me 10 yrs ago to have it removed, but I didn't listen. I had the upper wisdom teeth, but not the lower ones, which had been removed a long time ago. The dentist said that your teeth continue to grow while you are alive. The only thing that stops them is the presence of teeth, both top and bottom. Because I had no bottom wisdom teeth, he felt it would start causing problems. Well, he was right. About 3 yrs ago I had started experiencing pain in my lower gum area, on the right side, toward the back of the mouth. I used various creams, Anbesol, etc. They relieved the pain after a few days so I never thought anything of it. But, of course, the pain would occur again and, again, I would use a cream and it would take care of the pain for a while. But then about 18 mos ago I had my first TN episode. I went to the dentist and had him finally remove the tooth. The pain lasted for a few weeks and I went back to the dentist and he filed down the teeth and, basically, did all that he could. Finally, I had an intense pain session one night and I called the dentist in panic, he was going to recommend an oral surgeon. But before I had to seriously consider it, the pain just suddenly stopped. I thought I was fine. However, I was wrong. About 1 yr ago, I started having a tingling sensation in the jaw area again. It gradually grew worse and was accompanied by pain. I went to the dentist again, had him remove my other wisdom tooth (on the left side) and he did his usual filing of the teeth. None of it helped this time. The TN became full blown, I found I couldn't eat, I couldn't talk, brush my teeth, and it got to the point where I couldn't touch my mouth or the right side of my face without it triggering excruciating pain in my jaw. I became almost a recluse for the next week or so. Finally, because I couldn't do my job (it requires constant phone work), I went to an emergency room. There they diagnosed TN and I received my first prescription of Tegretol. I initially started out taking 1 200mg dose, but after I tried to resume my regular activities, such as jogging, it about killed me! I found myself taking as many as 5 200mg doses a day, just to feel no pain. But the problem with Tegretol was that I was walking around like a zombie. I couldn't really function, couldn't focus at work, and found myself wanting to sleep all the time. I had looked up all the information on TN and Tegretol on the Internet and found I didn't like the answers they gave. I generally do not like taking drugs, I prefer the herbal route for most illneses. So the thought of taking this drug for the rest of my life was unacceptable. Besides, I also didn't like the thought of what all the side effects to this drug was doing to my body. I also refused the idea of having surgery done, because they could not guarantee full success and there was always the possibility of it coming back. I preferred the non-invasive approach. That left the option of Acupuncture that I had read about on the Internet. I went with trepidation, but I had read that some said after 10 sessions they were pain free. For me, it took 29 sessons, which amounted to spending almost 1 yr to the day I was diagnosed, in acupuncture therapy. My acupuncturist was great! He used not only conventional acupuncture, but he also used electrical stimulation as well as Moxa (smoke therapy), in addition to herbs, to help me get rid of my TN. Yes, that's what I said, I am rid of my TN!! Though, I have to admit it has only been about 3 wks since I have been totally pain free. There were periods where it had disappeared in previous sessions. For instance, I was pain free about 3 mos ago, but I found that my teeth were reacting to cold liquids. So in his efforts to treat that, the pain came back. I know I have been pain free for a relatively short period of time, so I guess you can say, the final ruling is still out there. But for me at this point, I can say I wouldn't do it any other way. So, in the final analysis, I would recommend acupuncture therapy for any who can afford it. Because, of course, that is the main drawback to it. It is not paid for by any insurance company so the money has to come out of your own pocket. My sessions cost me $50 per visit plus $22 for the herbs. But, again, I consider it money well spent!
Name: Kathie My experience with TN began well over 3 and a half years ago. I suffered with the pain for several weeks before I finally broke down and went to my dentist, as I thought I had a dental problem with a crown. He took an x-ray, said there was nothing wrong with the crown, but suggested that I probably had TN. I came home, looked it up in my medical book, and, sure enough, it described my situation precisely. I then made an appointment with a cranial therapist who was very good at helping me with the stress that accompanies TN, but she could do nothing for the pain. She referred me to a neurologist who said that indeed I had TN. He said that if the pain got really bad, that I should go to the emergency room, and ask for a Tegretol drip. After reading the side effects of Tegretol (liver damaging, amongst other things!), I decided that I had to find another way to get well. It was about this time that I read an ad for a lecture by a doctor, an orthopedic surgeon, who had survived a severe advanced case of breast cancer. The ad explained that she had done it through natural means. This intrigued me, so my husband and I attended the lecture at a Natural Choices Expo. Dr. Day started her lecture by saying, "This is soooooo simple!" Every single word she said made so much sense! She explained that this 10-step Plan that she devised to get well from breast cancer, could be used to get well from virtually every disease! She had my attention! My husband and I came home from her lecture, went through our pantry and refrigerator, and got rid of everything that was not going to be good for our new lifestyle. Almost immediately after starting the new lifestyle, my TN pain was gone! Praise God!! At that time, I did not know there was a correlation between TN and digestive disorders. Then, late one night while e-mailing others with TN, I started to notice how many of us not only suffered from TN, but most of us had digestive disorders. I then, accidentally, ran across a website that explained that gluten in wheat products, and casein in dairy products, damages the small intestine leading to demyelination of the nerve sheaths. Those 2 things, gluten and casein, are the most mucus-forming substances that we can put into our bodies. I had already eliminated dairy, but I now eliminated all wheat products, and within 3 months time was completely well! Praise God!! I was so focused on getting well from TN, that I hadn't even noticed that my arthritis was completely gone, too! My husband's allergies had disappeared, too, and he had had allergies as long as I had known him. We both have never felt as good as we feel now. Anyone can do this by becoming a vegan, and drinking lots and lots of purified water. At our house, the rule of thumb is to "eat as close to nature as possible". That means that we eat almost all of our food raw, as cooking destroys the enzymes that are needed for proper digestion. We drink purified water a half hour before we eat, or an hour after we eat, as we do not want to dilute the digestive juices needed for good digestion. We also drink purified water several times during the day. We exercise, get plenty of sun and fresh air, also plenty of rest, and try to reduce our stress. It is also important to give thanks to our Creator for our good health, and have an attitude of gratitude. Benevolence is another step in the Plan. I have been completely well for more than 2 and a half years! Praise God!! Name: Carol Potter My pain is in the bottom left part of my mouth right where a moulder "was".
It is a "burning" pain. The medication I take helps about 75 percent, but when it starts to wear off
my mouth really burns and hurts. In the beginning I went to 5 dentists, a neurologist, 2 general practitioners
I went through 2 root canals, and finally had the tooth
pulled and still had pain in that area. I wonder how long this will go on. I would love to have
a partial plate put in but I have discomfort there and know it would just add to the irritability in my
mouth. I haven't chewed on that side of my mouth in over 2 years. I have had all kinds of test
and xrays including tests for my heart, and nothing shows up. I do think the medicine has made
me gain some weight, but I can deal with that, as without the medicine I would be so miserable.
I am being treated now by a facial pain specialist in Orlando, Florida. He is the only one that
has given me relief. Name: Kate To begin with I thought that the pain was toothache.It started 3 weeks ago in both cheeks, and still continues to be extremely painful. I have spoken to the doctor everyday,and have been given several tablets,which still not work and I am stuck with this pain.I'am 43 and have had 3 children and this pain is nothing in comparison. Name: Sharon I am originally from England staying in the United States and hoping to eventually live here. I hope nobody minds a "Brit" telling of her experiences. I have an attack of TN at the moment and during my sleepless moments searched the Web and found these emails from you all about your awful experiences with TN. It's a relief to know that my symptoms and feelings are not unknown. I think I had a first attack of TN in 1988 on the right side of my face. The attack lasted for months and eventually I had so much time off sick that I had to resign my job. My GP at the time prescribed Co-hydromol and a diagnosis of Post-Viral Syndrome. The drugs didn't work so I treated myself with almost every available analgesic on the market, to no effect. The pain eventually went away on its own after nights of sleeplessness, tears and unbearable pain. Then, in 1990, after a flight to Spain to my grandmother's funeral, I had another attack of the same pain as in 1988, still on the right side of my face. I thought it was a bad tooth. Again I took Paracetamol (in large doses not good for me). The pain stayed with me for the whole week, it was a nightmare, sitting up in bed rocking backwards and forwards for hour after hour. When I arrived back in England, I went to the dentist. He took a tooth out and the pain went. In 1992, another attack, right side of my face, only this time the dentist diagnosed infection and prescribed antibiotics. Unfortunately, the pain was the worse yet and I ended up almost overdosing on Paracetamol. I went to an emergency doctor who knew instantly what the problem was by doing a series of exercises with my face. She prescribed an emergency supply of Carbamazepine. I took the first one and bliss, the pain vanished after about 8 hours. Carbamazepine apparently takes 8-12 hours to work and has an accumulative effect. In 1997-to the present day, a series of TN attacks, usually every 3-4 months lasting anything up to 3 weeks. I have seen a neurologist, had an MRI scan, been to the usual dentists etc. etc. The diagnosis was eventually TN caused by a blow to the chin in 1986 which damaged my jaw sockets and thereafter resulted in arthritis which irritates the trigeminal nerves. I now get TN in both sides of my face. I do get a warning sign of an impending attack which is a tingling sensation in my lips and my teeth "sing". If I take the Carbamazepine when I get these symptoms the attacks are sometimes not so bad. Other than that, the pain is unbearable. I also get slight paralysis of my mouth on the side of the face where the pain is. This causes me to drool and slurr my speech. Sometimes the burning sensation is terrible. The particular side of my face where the pain is puffs up as do my ears. I barely sleep while the attacks last and I generally end up crying like a child. The pain with TN is like nothing I have ever experienced. When I went to see my GP to get my Carbamazepine increased she insulted me by saying "oh yes, the pain is a little annoying isn't it?" That is a complete understatement. I am no good to anybody when I have an attack. I have to lock myself in a restroom or anywhere where I can sit and rock until the drugs/painkillers give me some relief. I believe that stress, ice cubes in drink and chewing bring on my attacks. I believe I will have to have my Carbamazepine increased again and find an alternative analgesic. Ibuprofen only gives me pain relief for a couple of hours. I am only 41, 37 when the attacks increased. The thought of having to spend the rest of my life with this condition is unbearable, considering that the frequency of the attacks is supposed to increase with the time between each attack becoming shorter. I am loathe to have surgery. In England I haven't heard of any of the surgery that has been carried out in the States. Thanks for reading this. It's a relief to be able to get this down and to know that I'm not the only one with these horrific symptoms. I can't help anyone with advice, only understanding and sympathy. I know what you are all going through. Name: Rebecca My first bout of headaches was back in '94-'95, started after going on the birth control pill, no one could figure it out. March of '95 I had a left frontal craniotomy to biopsy a 2cm lesion on my left frontal lobe. Turned out to be scar tissue. Not sure what all the Doctor did while in there but my pain (which had been daily and excrutiating) stopped. For 4 years I was pain free and not a day went by that I didn't thank the Universe for my returned health. I went at life with avengeance. February of '99 my pain returned, out of the blue, and just as severe as ever. Always on the left side of my head, primarily my forehead and behind my left eye. It's a strong gripping pain with overlapping shooting pains that I can only describe as knife-like down behind my left eye. The pain was again daily and intense, I went from GP to neurologist to pain clinic and tried over 25 different meds before getting relief from physical therapy and the MS contin. For 7 months I was pain free and even managed to wean off the prednisone which had given me a terrible case of cushing syndrome, the effects of which I was also suffering (bone loss, weight gain, thinning skin, easily bruised, increased cholesterol etc). Then with a change in pain doctors I was convinced to try cortisone shots as a way to try to wean me off the MS contin as well. Not long after the shots started my pain returned and has been back again for about 2 months now. It is now to the point of forcing me to leave my job as a manager of a respiratory care department at a small hospital. I have about 6-9 hours a day of low level of pain in which I can function, the rest of the time is spent laying on the heating pad which seems to ease the spasming of muscles in my neck and upper back, or my boyfriend is doing physical therapy on me. I'm woken every night around 1 am and am up till 4 or 5 am trying to get the pain under control, eventually all the pain meds do a numver on my stomach and I have to take an anti-nausea suppository just to keep them all down. I have little to no appetite and have managed to lose 40lbs in the last 6 months between coming off of the prednisone and going on to the morphine. I can't function like this much longer, I will have to go on disability or something. Even if I wasn't a manager my work requires me to staff a 12 hour shift. I haven't been pain free or even at a low level of pain for 12 hours straight in 2 months now, I can't expect my employer to keep bending the rules for me. At least I have support at home, great support in fact. I am curious about surgical options though. A new nurse practitioner at our hospital mentioned a muscle release? Not finding too much information about it online, maybe I'm looking in the wrong spot. Peace and pain free times to all who suffer, thanks for reading. - Becca Name: Tina B. i already told my story i was rear ended by a 18 wheeler and brokr my jaw in 3 places had it rebroke and steel plates put in . lots and lots of teeth work done. my accident was back in 99. i just went to a new pain intervention doctor who told me about a surgery i could have to improve things . after i tell about it i want anybody who knows about this to pass imfo my way it would be a great help . i was told that they can implant a little tank in the back of my head that will distribute the medicatoin dirrectly to the fluid around my nerve. the tank would be permantly in my head and i would release the medicatoin by remote. or i can hop scotch from pill to pill . which is what we are all doing now right?? if there is anybody who has had this done or has heard about it please e mail me .THANK YOU!!!!! FELLOW PAIN PERSON TINA B. Name: Sidney My story is one of countless contradictory diagnoses by neurologists and neurosurgeons. Most have diagnosed atypical TN as my problem. Although my condition started out with pain in 1999, I no longer have the pain, but I have CONSTANT facial numbness on one side of my face: it NEVER goes away. It is similar to the feeling of Novacaine that never disappears. I often get the tingling that one associates with the gradual disappearance of Novacaine (which comes on in specially relaxed stages, such as during reflexology sessions); nonetheless, even after the tingling stops, the numbness is still there. Is there anyone out there in cyberspace who has had experience with this condition, and has found a treatment for it...I have tried acupuncture, reflexology, and I am on a maintenance dose of Neurontin of 1400 mg per day. I also need to specifically comment on Dr. Janetta's treatment...or should I say MALTREATMENT of my case. Following is my case history: In March of 1999, I visited the University of Pittsburgh Medical Health System. I happen to be a permanent resident of Athens, Greece, and a former Pittsburgher, indeed having attended both Pennsylvania State University as well as the University of Pittsburgh. When I found out through the Internet that Dr. Jannetta was considered to be a top surgeon in the field of Neurosurgery, and specifically had extensive knowledge of the pathology of Trigeminal Neuralgia, it would be an understatement to say that I was excited about the prospect of having an appointment with him to discuss my case. Prior to my trip to the United States to meet with him, I had consulted with about 10 different doctors here in Greece, some neurosurgeons, some neurologists, jaw specialists, dental surgeons, etc. There were serious disagreements among them about the etiology as well as the diagnosis and prognosis of my illness. I was hopeful, although perhaps not certain, that Dr. Jannetta's experience and background would get to the bottom of the matter. I brought with me numerous x-rays, scans, reports and other documents which would certainly help him to evaluate my case. I reminded him that I had travelled half way around the world to see him. On entering his offices (my wife accompanied me and is a witness to these events) he greeted us cordially. After about 5 minutes of discussion of my problem, he turned to his nurse and instructed her to prepare a time slot in the operating room for the following Tuesday. He spent a total of approximately ten minutes with me. He was constantly looking at his watch -- the nurse kept reminding him that he had to be in surgery -- and he abruptly ended our visit, asking me to leave my medical tests in the custody of his nurse, so that he could study them at a later time. At no time did he explain to me a) why he was planning a surgery; b) what exact procedure he was contemplating; and c) what exactly my illness was. I do recall asking how long of a hospital stay would be required, if I had to have surgery, and he replied one day. On leaving his offices, his nurse called me aside, and asked me if I was aware that the "operation" would cost about $45,000.00! Needless to say, I was stunned. I asked the nurse then how much of the $45,000.00 represented Dr. Jannetta's fee, and she replied $12,000.00! Now I had private medical coverage by an international insurer for $16,000. I told the nurse this also, and at the same time asked her for directions to the office which might be able to help me in the financing of this operation, in case that I would eventually be told the nature of the operation, and also in the event I would agree to undergo it. I had a lengthy discussion with the director of the office that handles these matters for the UPMC, and the upshot of that discussion was that the hospital could probably offer only about a 10% discount on the cost of the one-day stay. He suggested that it was my prerogative to approach Dr. Jannetta personally and ask him to "cut me a break" (to use the vernacular). But the director insisted that in no way should I imply that I had received this advice from his office -- or to put it in other words, that I had to do this strictly on my own. I left the hospital and returned to my hotel room. The following morning, I had a phone conversation with Dr. Jannetta's nurse. It was my intention to ask her if he had looked at my files, and to find out when I would visit him again to ascertain 1) whether in fact surgery was required; 2) and if so, what the nature of the illness was; and 3) whether he would help in the financing of the operation by eliminating his fee. I never got a chance to ask him any of these questions. Imagine my surprise and shock, if you will, when the nurse volunteered to me that he had already refused to lower his fee, before I got a chance to ask her! She invited me to come in and pick up the files I had left for his review. Although totally frustrated by now in my attempt to get a clear answer about the nature of my illness, I told her that I needed one more appointment with him so that I at least could learn his diagnosis, and his specific recommendations for treatment. She was very reluctant to schedule another appointment with him, but after I insisted, she relented. When I did meet with him the following week, he told me that since I "couldn't afford surgery at UPMC," he would recommend other neurosurgeons in Europe and Israel who probably would do the operation for an "affordable" amount. During this visit he did describe for me -- in scant detail, however, since again he was rushed (or being rushed) to finish with this appointment -- approximately what was involved in the operation. I asked him then to send a letter to my neurologist in Greece, i.e., to give him a deatailed account of your findings. The letter he sent was full of misrepresentations. It was abundantly clear from that letter that he did not study my files. He first states "Dr. Kassam and I had the pleasure of seeing Mr. Kornberg in the office today for his right-sided face pain." The fact is that I have never met Dr. Kassam, and I wouldn't know him from Adam if he passed me in the hall. The bulk of the letter then mainly deals with the repeating of the history of my illness as I related it to him, and simply describing my symptoms. In one sentence, he does state a "diagnosis" of "typical trigeminal neuraligia with atypical characteristics." What was any other medical professional possibly to make of that diagnosis? What about my illness was typical, and what was atypical? Where were the recommended treatments? Where was the prognosis? In that single sentence of "diagnosis", he made it clear that he hadn't studied my files. Nowhere in the letter did he state what kind of procedure he would have performed had I agreed to an operation. Finally, in that letter, he totally mischaracterized my intentions when he stated that I did not wish "to have a procedure in the United States because of the expense." I had made it clear to everyone that I had come to the United States for Dr. Jannetta's help, and that the ONLY thing I wanted and fervently hoped for was to find a cure in the United States to my problem. Before I left Pittsburgh for Greece, I contacted other surgeons to get their opinion. One of them was Dr. Lunsford, MD, Chairman of the U of Pittsburgh Physicians, a member of Dr. Jannetta's your own Department of Neurological Surgery (whom I had seen in order to learn if the Gamma-Knife procedure might be of help to me). He said it wouldn't, and also said that surgery was NOT indicated either. And then another neurosurgeon from another hospital said that surgery was NOT indicated, concurring with Dr. Lunsford. And then I contacted several neurologists, all of whom said that surgery was NOT called for. Yes, I understand quite well that different doctors can come up with differing opinions. Nothing however can change the fact that Dr. Jannetta's opinion was baseless (and therefore worthless) because he essentially dismissed my case knowing only that I couldn't afford the unbelievably outrageous cost of his services. Hippocrates, were he living today, would have been shaking his head in disbelief at the high-handed way I was treated by him and the hospital. And parenthetically, when I asked the neurosurgeon at one of the other Pittsburgh hospitals what the cost would have been if I HAD needed surgery, the answer was approximately $7,000.00, of which $1,800 represented the surgeon's fees! The long and short of it is that although it may be Dr. Jannetta's inalienable right to charge whatever he wants, or the UPMC to charge hospital fees as it deems necessary, I accuse Dr. Jannetta categorically of failing to take care to examine me thoroughly in order to make a true and complete evaluation of my illness, thereby violating the Hippocratic oath to "do no harm": he harmed me by misleading me, by giving me a useless report of my illness, when what I ultimately needed from him, after traveling thousands of miles to consult with him, was his studied findings. If it was Dr. Jannetta's true intention to study my files carefully, following my visit to him, so as to give me his expert advice on his findings, he ultimately and quickly chose not to do so, once he learned that I couldn't afford him. This whole story has the ugly smell of indifference at best, and of malpractice, imperiousness, and greed at worst. To say that I was treated shabbily would be a gross understatement. I subsequently sent a registered letter to Dr. Jannetta about this sorry affair, and I received no response.
I have no interest in being vindictive in this matter, and am convinced that given a second chance to do the right thing, Dr. Jannetta and the UPMC wouldn't drop the ball the next time around. My health, while not life-threatening, has deteriorated considerably, most of it due to the mental anguish I suffer daily at not having succeeded in getting straight answers from Dr. Jannetta. I am simply determined to get well. I believe that there are medical solutions to my problem.
Sidney J. K.
Name: cheryl letourneau MY NAME IS CHERYL I am 58 years old,a heavt smoker,and drink alcohol socially,well within normal limits. I am 5'6,168lbs. I have been a factory worker for 22 years,also a certified nurses aide. My first symptoms of TN showed up about 3 years ago,while brushing my teeth one morning. It felt like a light, pulsating electric shock inside my mouth in my right cheek. It lasted about 10 minutes and disappeared. I thought nothing of it,I know as you get older different changes occur in body and mind. 2 days later it happenend again. The pain was much more severe and started to spread further along the inside of my cheek. At this point I decided to see my doctor. I told him what was happening. He sent me for x-rays and found nothing. So, I continued to deal with the pain. It still would come and go,but not to the point that I couldn't handle it. Yet, I was frightenend,the pain was there, but no one could see it. I had never heard of trigimenal nueralgia. Finally on a Friday, it became unbearable. The pain brought tears to my eyes,the agony of it was unbelievable. I wanted to slice off my own cheek. I was convinced it was caused by a tooth. I called an oral surgeon, told him what was happening and begged him to fit me in, thak god he found time for me that day. He took x-rays of my right upper back teeth, and found nothing wrong. He also called my regular dentist.Who told him he had found nothing wrong, either. I was in agony. I pleaded with him to pull my tooth. He didn't know which one to pull, so I told him to take them both. Under local anesthesia, I was finally without pain,thanks to the novacaine, my face did not hurt.I was sure it was over. A week went by, then one morning while rinsing my mouth out,bang, like a firecracker exploding, the pain was back. I called my doctor,again. I had to wait 3 agonizing days to get in to see him. I turned to alcohol and pills for relief. It continued all weekend. i could neither eat nor speak. I finally passed out from alcohol and pills. It was my only relief. When I saw my doctor,he sent me to a neurologist. After checking my mouth and jaw, he ordered a MRI,which couldn't be done until the following week. He told me what he suspected, Trigemenal Neuralgia. Finally, a name for the nightmare,Thank God! He gave me tegrotrol to take twice a day,they took hold after about 3 hours. I was free from pain. I had the MRI done, and they also found nothing. So what now? I was told to stay on the pills. I did so for 4 weeks. The pain stopped, so I went off of the pills. I stayed pain free for 3 months,then,the pain returned. Worse than before,it spread down from my upper my cheek, and shot down halfway to the middle of my lower jaw. I called my doctor and he increased my dosage of tegretol. I started drinking more. The pills helped my pain, but caused my stomach to feel raw, I had no appetitie, I could not eat. The doctor recommended baby foods, and liquid diet drinks I could sip through a straw. Tipping a beer can seemed easier, due to the amount of pills I was taking to control the pain, I could not eat. I didn't go anywhere except to work. I was now taking 6-8 pills per day. My balance was way off,I would fall asleep standing up,I would not talk to people,and it hurt to smile.This continued for 3 years. I now wieghed 120 pounds. I fell into a state of depression. My family was suffering. I knew I was no longer their shoulder to lean on. It broke my heart. I had kept my condition from them, not wanting to cause worry, but finally i could hide it no more, My youngest daughter,Vicki,finally got it out of me.When i told her what I had, she went to the internet to look for information.She told me about the side effects of the pills and the long term problems they could cause. She also found me support groups. I called and talked to people who have this disease and read all the information she found. I knew something had to give, and I made my decision. I knew I was no longer alone, and it gave me strength. I set up a meeting with my neurologist and told him I wanted to see a neurosurgeon. He didn't try to change my mind.He said there was a possibility I would still need medication after surgery. I did not care. The time had come to fight for my life back.I would no longer go on the way I had been,my life revolved around pain, drugs, alcohol and depression. It had to STOP! I chose a doctor at UW Madison. I went as soon as they could get me in. It was a weeks wait. I had a consultation with my new doctor,he agreed with my other doctor about the TN.I was given my surgical options in detail,success rates of each type of surgery and what to expect during and after recovery. I chose microvascular decompression. The surgery was scheduled for 3-6-01.12 days to wait. I made it through those 12 days with my regular routine, more beer cans for the recycle bin, I could have made a fortune if I had crushed and bagged them myself. The 5th of March, I could not eat,drink or take meds after 12:00 am. I was to be in Madison by 8:30 am.I took my last tegratol at exactly 12:00am, hoping it would last.On the morning of the 6th, I was having some pain,but I knew i had to deal with it. The operation was performed at 10:30 am. It took 3 hours. They found 2 nerves to fix, and a "spiderweb" of nerves at the base of my brain that they cushioned. The spiderweb they had to cushion from the top because if they lifted it my heartbeat instantly became erratic. I woke up with a big headache.I knew it was over. Relief washed over me. The doctor came in and asked me to smile. I very cautiously did,and it DID NOT HURT! He gave me the thumbs up sign and I smiled again. I was in the hospital for 2 days. On the way home we stopped for a cheeseburger, I WAS HUNGRY!!! I inhaled it! Yum-Yum! There was and is no more pain for me. I am on the road to recovery, it has been a month now, and i am thankful for the Love and support from my family,and my best friend and ally,Les,my love for 14 years. I hope this helps some one, anyone, who is dealing with TN. Reach out for support, it will make a difference. Cheryl Name: Rnee On September 29, 1999, I went to a dentist with no pain and left crippled. He performed a crown prep on my #15. Immediately after leaving his office, I felt intense burning in the area of the tooth, gum, cheek and jaw. I called him and he told me to see my family doctor for a possible sinus infection. I saw my family doctor three times, and although I didn't have a sinus infection, I was given three different rounds of antibiotics just to be sure. I kept the dentist informed that I still had intense pain and burning that would bring me to tears. He assured me, it had nothing to do with his work. I went to an ENT specialist, and was told I didn't have an ear problem but a tooth problem. I went back to the dentist crying, and in burning pain. He explained to me that over the course of the three months he had me going to my family doctor, that I must have developed TMJ on my own. I asked him how do you just develop TMJ and why did it start immediatley after his crown prep. He told me that female stresses and work related stress would have caused it. He made me a cuspid to cuspid bite plate and sent me on my way. I quickly researched TMJ and realized I didn't do any of the contributing factors like, clenching, grinding, bruxing etc., because I am mouth breather. I finally got fed up with him treating like an idoit, and went to his partner on a Saturday in excruciating burning pain. He had no clue as to what was wrong with me and performed part one of a root canal on my #31. On my return visit for part 2 of the root canal on my #31, I told him I was not going to let him touch me until he told me what was wrong with my #15. He said he didn't know and gave me five phone numbers of local endodontists. I asked for my dental records and molds. They said that the molds had been throw out and they gave me only two pictures of my #15 they printed out of their computer. I felt their office on December 21, 1999, in tears and got in my car and called every endontist on the list. I got an emergency appointment that night and the endodontist removed the crown because wearing it and biting on it hurt so badly. I left there with the crown off and the tooth exposed. Assuming I had TMJ, I called every dentist in the phone book asking if they specialied in TMJ or knew anyone who did. None of them wanted to see me, but one of them referred me to a "Facial Pain Services" dentist. After a $400.00 consultation, he said I had Miofacial Pain Disorder and Internal Derangement. He made me a $700.00 bite plate and put me on Valium and Flexeral. I went to phyiscal therapy and bio-feedback. Nothing Worked At All. I went to a local oral surgeon and then a crown and bridge specialist and both didn't find any evidence of clenching, griding, bruxing and informed me that I am a mouth breather and they didn't think I should be wearing the bite plate. The facial pain specialist become indignant about his diagonis and started blaming me for my condition not getting any better. He said I was not following his protocol and should go to physical therapy and bio-feedback twice a week. I started challenging some of his theories because after $4,000.00 in payments to him, to adjust the bite plate that did nothing, I couldn't justifiy continuing treatment there. After I stopped going there in August 2000, things really got ugly and he wouldn't release my dental records. He finally charged me $150.00 to get my records back and this is a violation of the Board of Dentistry. I have filed a complaint there againist him. Because I couldn't get a local dentist to treat me, I had to drive an hour to the Dental School. I lost both the #15 and the #31 there. Yesterday, I had an appointment with the head of the oral and maxillary pain department. I was told I didn't have TMJ but Atypical Facial Pain, and that is why none of the TMJ treatments have worked. Big surprize! I am on Elavil as of yesterday. I am a 31 year old mother of three, with a successful business with assests of 7M that has been built from the ground up over the past ten years. For the last year and half, I have been disabled by the constant pain. My husband has had to take on all the household duties including feeding me in bed on ocassion. My business is up for sale and I have lost over a year of my life not to mention my health insurance. What bothers me the most, is the lack of accountability of the dentist that crippled me. How dare them! As a Christain person, accountability is extremely important to me. I am not giong to lay down anymore in this pain and quietly go away. I didn't cause this to happen to myself and you probably didn't either. Name: sophie I have had more procedures and meds than I can remember. I have ATN and AD on the left and have been suffering for about 20 years now. The AD came with my last MVD 5 years ago. About 5 weeks ago, I slipped the disc in my rt side, my good side. Now I have pain on both sides plus the AD and I am out of my mind. No pain meds help. I had the Arthrocentisis done on both sides both of which were unsuccessful. I am scheduled to have the Arthroscopy and/or the Arthroplasty in a couple of weeks. I would like to hear from anyone who has had these surgeries. I am really afraid because they said one side effect can be not being able to close the eye. Please help me ASAP as my surgery date is coming quicklly. Name: Marti I have had many nerve problems all my life. Recently the Dr.'s have decided that all my problems tie to Fibromayligia. Last Feb. My Dad died. I was totally stressed. I have always had much stress which causes most of my problems. This stress was the greatest. 2wks after he died I started getting burnig and pain on my head. It goes down the back of my neck. Other times the pain and buning goes down my forehead, to my eyes. It is not a headache. It is just painful on the outer skin, all over my head on top most of the time. It actually feels hot and I can melt ice on those areas. The cold helps it feel a little better. I was away from home and out of state for a few months so I could not see my regular internest. When I finally was able to see him he thought I had a skin problem and gave me Nioxin shampoo to use for 6mo. It made some of my hair fall out and I stopped using it. I am still loosing alot of hair in my brush every day.Again I was gone from home again. I got back and told him the shampoo didn't help at all!. He sends me to dermatology, Dr. can figure out nothing. Next went to rhumatology, he ruled out lupus but did not konw what I had. Mean while I looked on line for "burning scalp" and found others who had the same problem. I mentioned it to my regular DR. and he said don't believe what you read on the net... I asked to see a neurologist. Right away he said I have occipital Neuraligia. He tried a triptimine type medicine but I ws allergic to it . Now he has tried me on Neurontin,a high dose-600 Mg 3xs a day. If I get a little stress I get burning bad still. I have gone to fibromayligia support. They mentioned more B-12 by using shots. Also they talked about lydacane injections on painful areas. I have not tied the injections yet. I take many herbs , vitamins and minerals. Nothing has really helped. Some days I don't even want to get out of bed. My husband thinks Im crazy. I take so many pills. I take antinflamatories like Indomicien, and Ultram for pain. Ive have TMJ for years and have surgery on my jaw 2 times. I have been in car accidents and have had whiplash years ago. I have interstatial cystitis, Irritable bowel, Carpel tunnel, frozen shoulder, and many other nerve problems. I have been to physical therapy, have special exercises to do, and do Yoga. Im a 49 year old female. I used to be so active but I had a major blood clot 8 yrs ago tha made mee have deep vein thrombosis in my legs. They are always in pain. That slowed me down. I don't exercise alot. Im an artist by trade. I feel so stressed. alot of it is the depression that I get not knowing how to get help. The Dr. doesn't give me answers, how long do I have to stay on the meds.? They make me not think so clearly. Is there a surgery like I read about that would help? I can not seem to get answers. I don't know how to get help. Like I said, I take all the medications, do the exercise, go to support, eat right. I even have a tens unit that doesn't help. The only thing I have not tried is accupunture. I can not afford it becaue it is not covered by my Kaiser insurance. Does anyone else have my same problems?I do not have the shooting pain or headaches like most with my so-called problem. I live in the desert of Calif. and spend alot of my yera in northern AZ. Are ther any support groups out there in southern Ca. or AZ.? I know this is just a story exchange and not a chat room but I need to know if others have my problems... Hope to hear that someone does....IN pain, Marti Name: Ellen Hi everyone. I wrote a couple months ago about my story and just wanted to update you all so you know there is hope for pain reprieve, even if it is for a short time. My neurologist eventually prescribed neurontin and gradually increased the dose to 1200. I was pretty much pain free every day for a couple months. I'm doing so well that he started to reduce the dosage. I'm still doing pretty well after a week on the lower dose. Please keep your fingers crossed for me. I think of you all many times a day and I wish the best for all of us. Ellen Name: "Jo" My third and worst episode with trigiminal neuralgia was about about a year and a half ago. I, of couse, went through the system as most people do. I went to a dentist, an ear, nose, throat physician, a chiropractor, a regular physician and finally a neurologist for pain management with drug theraphy. I took neurontin and tegretol. I did not like the way these drugs affected my body. I ended up going to Shands Hospital at the University of Florida in Gainesville, Florida to see Dr. Rhoton, Neuro-surgeon. It was the best move in my life. I scheduled surgery for a vascular decompression procedure (the only procedure that leaves you with feeling in your face.) I had surgery August 15, 2000 (7 months ago) and I am pain free. I was in the hospital for 4 days. Went back to work in 2 weeks. Recovery was easy. I only had head-aches for about a couple of weeks after the surgery but they were controlled with over the counter Tylenol. I would not hesitiate to advise anyone who wants a procedure to eliminate the pain to have this procedure. Also it is the "only" procedure that allows you to retain the feeling in your face. I am doing extremely well and pain free thanks to Dr. Rhoton. I would do it again in a heartbeat. Name: Sue I am writing on behalf of my mother who has been suffering with atypical trigeminal neuralgia for close to ten years. After avoiding surgery for so long my mother decided to have the gamma knife radiosurgery a year and a half ago. Unfortunately, this only caused her pain to worsen. When she could no longer take the pain she had the MVD procedure done. This seemed to improve her pain for only about a week or two until the pain once again came back- even worse than it was before. We don't know what to do next. We have heard a little bit about a neurostimulator procedure to alleviate the pain. Does anyone know about this? I would also like to know if anyone had a failed Gamma knife procedure- and if so, what did you turn to next? Thank you so much. Name: Marguerite I have atypical TN on my left side. I know my pain is not as severe and debilitating as regular TN, because I do occasionally have the typical "shock" pain and I can't imagine having that kind of pain on a regular basis. I am awed at the courage it must take to live with typical TN. Briefly, my pain started four years ago, two years after I underwent two separate surgeries to correct a malacclusion (jaw surgery). I have always wondered whether these surgeries damaged the trigeminal nerve. Before TN was diagnosed, I had another surgery to remove a broken screw near my left sinus, leftover from a previous surgery. It was believed that the screw was interfering with the nerve, causing the face pain. The pain remained consistent after the surgery, and I was eventually diagnosed with atypical TN. I take Tegretol, but the side-effects (grogginess, stupidity, memory loss) interfere with my job performance, so I try to take as low a dose as possible(200 - 300 mg/day.) When I first took Tegretol, the pain stopped within two days. Year by year, the pain has worsened until I have it most days. When my sinuses are irritated or I suffer from allergies, the pain seems to be worse, so I am currently seeing an EENT to see if anything can be done to keep my sinuses clear. Using a nasal moisturizer seems to help, too. I would be interested in hearing from anyone whose pain is triggered by sinus stuffiness or allergies. Fortunately, my pain is not triggered by touch. I would also be interested in hearing from anyone with Atypical TN. I often wonder if I actually have TN or if it is something else causing the pain. Name: "saltbreeze" Had a serious TMJ disorder. Surgery fixed it in 1984. Moved to TN and a Dentist who was supposed to understand TMJ replaced two old fillings WITHOUT anethesia AND he cracked the teeth during the nightmarish procedure. The new dentist placed a crown on the most severely cracked- never felt right, ached all the time. He left state (later learned he had been publicly sanctioned by GA Dental Board). During cleanings, his hygenists (two separate ones) pried my mouth open - hurt me. Doctor distanced himself from me and left state. Found a great dentist but shortly after first cleaning, theother crcked tooth broke off. THe dentist did not prescribe any muscle relaxers and the pain has been too much. Cannot get it under control. Most TMJ Oral Surgeons won't see me (not a surgery candidate). I have burned up my old TENS unit, and lived on aspirin in accelerating dosages since 1995. Saw the leading specialist in GA last week, he said not TMJ (though only took one panerex xray). Gave me prescriptions for Vioxx and Soma and referred me to a physical therapist. ALso told me to see a rheumatologist (he offered no referral) and a physiologist (??? offered no referral and did not even write it down). I drove over an hour to see him. The therapist is also an hour away. I cannot drive while taking the medicine. My husband drove me to a consultation with the therapist - he did nothing but tell me how to sleep - been doing it that way for YEARS, and how to sit - no help - and he manipulated my neck in a manner that made my jaw start to pop (with pain) THE WHOLE THING I HAVE BEEN TRYING TO PREVENT! He also gave me exercises to do at home - shoulder rolls (mild temporary help), reaches (mildly painful), and side stretches (horribly painful). The drugs do nothing but knck me out or make me loopy and nauseous without any comfort to the pain in my head, ears, neck, and back. The therapist also said for me to walk for twenty minutes twice a day - I can't because of the loopy medicine. I have a new TENS unit - cannot even find comfort with it - therapist was NO HELP WITH helping me find the proper settings, said to just play with it. I have two hydraculators - they are helping a little, very limited. I don't know what to do - I am so sad. I can't sleep well- the medicine has me up and down all night. The pain in my ears, head, and back is almost too much for me to take. I have a high tolerance for pain - I have battled this for five years. Now it is winning. Can't someone help me figure this out! Name: Bob D. This is a follow-up to My Story of 5/16/2000 I was diagnosed with TN 18 years ago. After 3 months it went away on its own only to return 4 years ago. Tegretol was used to control most of the pain however the dosages had to be increased to the point I had great difficulty concentrating and thinking clearly. And I would still have break-through pain. I tried accupuncture with some limited sucess. When my neuro suggested Gamma Knife I was ready for it. I had my GK procedure done at Hoag Hospital, Newport Beach, CA 3 years ago and have been pain and medication free ever since. My pain relief was immediate (a fairly rare occurence). I understand most pain relief starts in 2 to 8 weeks after the procedure. If anyone would like more information about my experiences, please contact me.
Name: Meirav I write you from Israel, in the name of my cusine, 29 years old, Man, and usually healthy. already it has been 6 years since he went to a simple dental treatment, and since than.. all his life got worse, with a terrible pain, which almonst all of the medicines coldn't help him. I enclose here as follows the names of the medicines, according to the recipes, which Shay Elbar gave me: 1. TEGRETOL 200mg 2. SEROXAT 20mg 3. PROZAC 20mg 4. OXYCONTIN 10mg 5. INDOMED 25mg 6. NEURONTIN 300mg 7. STADOL N.S. 8. MEXILLEN 50mg 9. ELATROL 25mg Shay is a very talentfull guy, and since the "simple" treatment, he can't do anything with his self... he even thought of a possibility about Suicide, and I write to you here, to response to my Email... please.. if you can save this person, that since than.. he's not alife anymore.. he is like ZOMBY at home.... Waiting to your responses to my Email (and if there's any Doctor which reads this lines, please PLEASE write back your comments, and maybe some recommendations). I wish you would answer me.. Meirav Vyhnak Israel Name: mike My aches began nearly a year ago.I was referred to a dental specialist and then a haemotologist who could find nothing out of the ordinary.I finally stumbled across this great site and found others who have similar problems and unfortunately those with much worse ie TN.My ache occurs every day though with varying duration.Untypically i experience the ache in both cheeks, though my right side is slightly worse.The information under "Atypical face pain" points to only one side of the face.Is it possible to have atypical face pain in both sides of the face or have i got something completely different? I have only been taking the carbamazepine for a week but so far no sign of the ache diminishing.I will ask my doctor for elavil (amitriptyline) as this seems to be recommended - maybe in conjunction with my present treatment.I'll let you know if/when i get a diagnosis and what hopefully works.All the best - mike Name: dee-dee My pain started immediately after a crown was placed on Tooth #5 on April 10, 2000. I told the dentist it was tight, to which she replied, "We want it to be tight." I left her office in much discomfort, but thought it would subside. A few minutes after leaving her office, I applied lipstick and discovered the strangest sensation when I touched my upper right lip, the area just above the crown. I can only describe it as being hard. That sensation still persists, although it seems to have changed a bit. I can now apply lipstick without feeling that that area is hard, but it still doesn't feel right. For many months, I felt like something was swollen in that area after I talked or ate. That puffiness has also decreased, but I still have some of that feeling left also right above where the crown was placed. Most of all I am bothered by the sense that I cannot talk properly. It actually hurts to talk. A neurologist prescribed Neurontin and I was on the maximum dosage of 3600 mg/day before I found any relief. At the same time I was also taking Paxil. The neurologist didn't know how to deal with facial pain and seemed unwilling to help me, so after the burning pain in my cheeks, lips, and gums subsided I decided to wean myself off the Neurontin. The pain returned. I had also weaned myself off the Paxil. I found a pain management doctor who prescribed Lamictal. It has helped with the burning pain, but I am still left with the strange sensation above my upper right lip. It hurts to press on it. Now you would say, "So don't press on it," but I am always aware of the fact that something is not quite right with my mouth and I am still uncomfortable speaking. Through Internet research I have diagnosed myself with Atypical Odontalgia. One of the symptoms was called "phantom bite," which I complained about for a long time - the feeling that may teeth were out of occlustion. My dentist (new dentist, by the way) tried several times to adjust the bite, but it never helped. Then after reading about phantom bite, I realized the problem would not be corrected by adjusting the bite. Has anyone else experienced a problem such as mine and, if so, what is the prognosis for complete recovery? My pain management doctor cannot predict the outcome because he said too little is known about the condition. I might be on meds the rest of my life to control the burning pain and the strange sensation (whatever it is) may never go away. By the way, I had the first crown removed and replaced by another dentist. I thought the first crown was too tight, but removing the crown did not solve the problem. Obviously a nerve was damaged when the crown was placed - the dentist did not take the time to fit the crown to the space - she just rammed it up under my gums. Thank you for listening to my long story and I appreciate any help. Name: William Is there anyone out there from Belgium or Holland. I'm suffering from atypical TN since 12-1999 (from 03-1986 however, I had several sinusproblems and also a lot of pain, but I was'nt diagnosed a TN patient). Your help is wonderfull, but any help near my home would be even more wonderfull. Name: SHELLEY My story started 4 months ago. I got Shingles on my right side of my forehead. I mean only two small pimple like things on my right side of my forehead. Now I was told I have ATYPICAL FACIAL TN. Today I asked the doctor if this will go away and he stated that the nerve may repair itself, but then went on to say my case is rare. In 30yrs he has not treated anyone who had gotten this from Shingles. So I have no idea if this will go away. Really can the nerve repair itself? Is there anyone out there who has gotten TN from Shingles. The meds are helping but I still have times of really bad pain on my face, teeth, head and my neck kills me all the time. Please someone talk to me who is going thru what I have so I can have a better understanding. Please help Thanks, Shelley Name: David I have facial neuralgia as a result of an error during surgery to repair an orbital rim fracture and orbital blowout fracture. The doctor did a rigid fixation, placing a 2" long plate with 6 screws on the orbital rim. After surgery I had a tremenous amount of pain, worse than before surgery, and a terrible burning sensation in the cheek. My upper lip, from the center of the lip to the edge of the mouth, was completely numb, as if I had just returned from the dentist. The surgeon told me that the infraorbital nerve had been severed, so there was nothing that could be done. He also refused to give me any pain medication, saying that I was becoming addicted to them. After seeing three different doctors in a ten week period, trying to get some relief from the intense pain and burning, one doctor finally agreed to remove the plate. It turns out that one of the screws was too long and went into the maxillary nerve, right at the branch of the infraorbital nerve and middle/anterior alveolar branches. The intense pain and numbness are gone, however, I still have a constant burning sensation in the cheek. The pain management doctor I am seeing has me on 1800 mg. of Neurontin (300 mg 3X a day and 2 at bedtime) and 40 mg. Pamelor (20 mg. in the morning, 20 mg. in the evening). This is working great to control the burning sensation. Name: "Jane-Dane" I never had facial pain until my last trip to California. About 1 hour in the flight I had a numbness in the left side of my upper lip and left side of my nose, which was accompanied by facial ache located mainly in my upper jaw. Thinking it might be an allergy, I took a Benydryl for Allergy and followed that about 45 minutes later with an Advil. Within an hour of so, my pain was gone and did not return until my flight home, when the exact same symptoms occurred. It was unnerving, to say the least, since this had never occurred to me on any other of my infrequent flights. I saw my dentist after I got back, thinking perhaps the cabin pressure had caused a bad tooth to flare up, but after several Xrays and examination, nothing could be found wrong. It was my dentist that mentioned trigeminal neuraligia. Until then, I had never heard of this condition. I have not been to my doctor yet, but will go as soon as the opportunity presents itself. Does anybody have any ideas on this??? I really need some direction here, because I'm quite reluctant to plan any more flights until I can get at the bottom of this. Name: Doree I have just been diagnosed with Occipital Neuralgia. I am currently suffering with the pain, I also have migraines and or stress headaches. After doing some research I have become depressed, does anyone have a success story? Right now I feel helpless and a bit hopeless. Doree Name: Bob This has been a 5 year struggle for a diagnosis. I have undergone every imaginable test including MRI, and have seen every specialist possible. Without exception, none could provide a diagnosis.I still don't have an accepted one. The medication has controlled my spasms completely, but I still go weeks at a time with severe pain swallowing and speaking. For the first years the problem occured routinely in the late spring and lasted into October. This year it continued into December. Have others experienced the same kind of cycle? Name: Lisa I finally had the radiofrequency rhizotomy done on 2/6/01. It's been a week, and I'm doing really well. The TN pain is gone, and I am adjusting to the numbness. The right side of my tongue is numb, which I didn't expect, but the doctor says that should get somewhat better. I'm having trouble with my jaw--it hurts to open my mouth all the way. The doctor says that should also get better with time. I've been having sharp pains in my ear, and the doctor said he doesn't know what would cause that, but he has heard of it before, and it too should get better with time. These post-op results are still preferable to the TN pain, so I would say my surgery was a success. And the surgery itself was a breeze--I went to work the next day, and even went to the health club and worked out. I'll report back if anything changes. Best of luck to everyone--I hope you all find relief! Name: Linda I'd very much appreciate REFERRALS to: 1) a communicative, sympathetic NEUROLOGIST & 2) a specialist (or TN-experienced) DENTIST. I'm in the Ft. Lauderdale, Broward County area of SE Florida. If necessary, I'll also travel to Miami-Dade County. THANKS (no other email, please!) Name: Anne I have had chronic pain in the neck since my late teens after a whiplash accident. Late 1999, I further injured my neck after swimming (apparently breatstroke is to blame). A few weeks after the injury I was hospitalised with severe head and facial pain. Since then, I have been to hospital a few times and seen 2 neurologists. I first was given Epilim but had to come off it due to side effects and Epilim was replaced with Endep. After another hospitalisation I was put on Neurontin which was very effective but then after a few months, the facial pain became worse and I was put on Tegretol. At first, the facial pain was thought to be connected to the neck injury and considered as referred pain. Then, I found relief with the Bowen Technique administered by an osteopath. I stopped Tegretol after 4 months because of the side effects and also the facial pain had greatly diminished. However, while my neck was improving, the facial pain came back in force so I was put back on Tegretol and then the diagnostic was changed. I was diagnosed with trigeminal neuralgia on top of the occipital one. This is not great news. I am still suffering from the side effects from Tegretol yet it gives me relief. It's a catch 22 situation. Any suggestion about different treatments, preferably non medicated. Thanks Name: Larisa I am a little older than 30. I work on Sakhalin island - Russia. Diagnosis set is -Neuritis of Trigeminal nerve. My troubles started in December 1999, when my 7th tooth in the lower jaw bone was being cured I had to be in the cold for a week at the temperature 20 degrees Celsius. Possibly this was the cause of the disease. After the 7th tooth was extracted my condition didn't change, constant dull aches didn't stop and transformed into the acute ones. When cold the ache becomes unbearable. Treatment: acupuncture, laser therapy, pills "Finlinsin" for a long period of time, intra-muscular injections with "Traumeels" and "Ketorolac tromethamine". Alleviation doesn't come. Moscow specialists proposed intra-skill surgery for the lower third branch Trigemenal nerve cutting off. In Germany - http://www.v-block-medserv.de I was proposed the treatment following Dr. Kuller method based upon so called alive cells transplantation. If You know anything more about this method, please send me Your information. In the end of January, 2001 after the recommendation of a patient Mr. Lezlee from the USA, having analogous diagnosis in http://www.dynatronics.com I came to know about existence of the Dynatronics drug (medicine) - the drug that alleviates chronic aches. As the press releases promise (read the following) - this is a revolution in the struggle with the ache. I ask people who knows or have heard anything about the use of the medicine to send answer to me. According to the reports by Mr. Lezlee the results are very good.
http://tower.geon.donetsk.ua/sedlak/ Name: Gerry ONSET OF TGN My first experience of TGN 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 that seemed to come from deep in the jaw near to where the tooth was treated (lower jaw, right side, slightly nearer the front than the back of the jaw). TN 'CAUSED' BY DENTISTRY? Knowing nothing about TN, 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. TN 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 TN (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 TN 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 TN and suggested I take Carbamazepine (Tegretol) as a diagnostic test: if it relieved the pain then, almost certainly, the problem was TN. Oddly enough, it was at about this time that my own dentist suggested that the problem might be due to TN. 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 that 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. 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 three tips that may be helpful to anyone who has recently developed TN: 1 Because Carbamazepine and Amitriptyline both take several weeks to build up in the blood stream, one specialist suggested to me that there was no need to spread the drugs through the day, that they could all be taken together, perhaps at bed time. I have found that this advice is quite wrong. Taking the drugs for a given day all at the same time makes me feel very ill. I tolerate the drugs very much better if they are spread out through the day. If you have decided that that you cannot tolerate the drugs but have been taking them all at one time each day, try spreading them out. You should find that they are much easier to tolerate. 2 Because the process of taking pills becomes 'automatic', it is easy to forget whether you have taken a particular set of pills. The answer to this problem is one of the boxes sold by pharmacies where there are compartments for each batch of pills. I have found that the type of box with 7 compartments (one per day) is quite adequate because the number of pills in each compartment is small enough to see whether any given set of pills has been taken. The boxes with 28 compartments are too big and awkward to carry around easily. 3 If you are taking Carbamazepine, don't let anyone prescribe Erythromycin antibiotic for any reason: it interferes with the working of the Carbamazepine. In my case, the dosage of Carbamazepine that I needed to take to control the pain shot up from 800 mg per day to 1600 mg per day and it took a long time to settle back to the original figure. 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 specialising in MVD, including an examination with MRI. He says he can see an artery in a position where it would be likely to cause TN and he suggests that MVD would have a good chance of success in my case. However, I have discovered from my research that the risk of death from this operation is about 0.7% according to one study. The surgeon himself acknowledged a death rate of "about 0.5%". Apart from the risk of death, there is the additional risk of deafness in one ear or ringing in the ears (tinnitus) or both. 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 or until 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: Marguerite My husband had 2 bouts with TN, with almost a 2year break between. We're HMO members in a mid size community in Central Calif. I began web surfing for help and found the "list" where patients email back and forth and discovered a whole world of information that didn't seem to be available anywhere else. After some months of dibilitating and semi-effective medication we were refered to Good Samaritan Hospital in Los Angeles where Dr. Skip Jacques did the Gamma Knife procedure on Jack- Jan 13, 2000. About mid March 2000 Jack was off all meds and pain free. It has been a full year, and it seems like another lifetime ago. He is pain free and TN is a memory. Thank God and Gamma Knife. He had what is called classic TN. I dearly hope that anyone with this kind of facial pain can have access to this procedure. Jack is 79 and in good general health. Name: "Rita" I have had tic douloureux 3 times now 4 and have had surgery 3 times my last time in August of 2000. I have no feeling in the left side of my face and have to use artificial tears on a continuous basis along with nasal spray. In late January of 2001 I could feel the problem start again and will be forced to go back on medication again. I dislike being on the medication as I feel like a zombie and have had reaction to most of the medications. I have multiple sclerosis and am told because of it the tic douloureux just moves from one spot to another. I am inclined to believe this as now it is about 2 inches to the right from the last episodes. I am wondering if someone could tell me of other method of controlling the pain or if there is another form of surgery other than the magnetic wire used for mine. I understand that there is a procedure where the insert a small sponge in the back of the head and also magnets have been used. Any info I can get on this I would be happy to hear. Name: Kathy I have had this for 14years,it was caused by a Doctors negligence.For 4 of those years I would seek out Doctors that would take this pain away. Now I don't use any medication,I have found the best way to cope with this is by not letting it take over your life. That is hard when you are in pain 24hours a day.I have found a way:ACCEPTANCE of the pain: Relaxation of the muscles around your face and head will help reduce the level of pain.When you get an attach don't hold your breath, BREATH with it that will also help.Your mind can only pay attention to one thing at a time, so when you are thinking about breathing you are not paying attention to the pain.Keep your mind away from the pain experience by doing the things that you love to do. I have found this a great way in being able to live with the pain. At night when a get woken up by an attach I VISUALIZE a peaceful place that I like to go and the attach is not as bad as it was when I didn't use this or when I was taking medication that did not help in anyway. I hope that this will help someone else. Name: Kathy I have had this for 14years,it was caused by a Doctors negligence.For 4 of those years I would seek out Doctors that would take this pain away. Now I don't use any medication,I have found the best way to cope with this is by not letting it take over your life. That is hard when you are in pain 24hours a day.I have found a way:ACCEPTANCE of the pain: Relaxation of the muscles around your face and head will help reduce the level of pain.When you get an attach don't hold your breath, BREATH with it that will also help.Your mind can only pay attention to one thing at a time, so when you are thinking about breathing you are not paying attention to the pain.Keep your mind away from the pain experience by doing the things that you love to do. I have found this a great way in being able to live with the pain. At night when a get woken up by an attach I VISUALIZE a peaceful place that I like to go and the attach is not as bad as it was when I didn't use this or when I was taking medication that did not help in anyway. I hope that this will help someone else. Name: Clarence Hello again, I had a couple of postings up in the past, but for some reason they have vanished. Nevertheless my story is still up in the Alternative Treatment Section in the Nerve Block area; Positive results from Nerve Blocks. As I have written in the past I have had great luck with facial nerve blocks the past three years. Many people from the site have contacted me, and likewise I have contacted many people from the site. I mail out a package of nerve block chapters to anyone who requests them. I will also answer any questions you have. All I want is reimbursed for postage, Nine dollars. Looking forward to hearing from you! Clarence Austin
Name: Billy Smith My mother contracted this disease via a tooth extraction almost 15 years ago.She just turned 59 last month.I have watched her cringe and almost drop to the ground from a breeze blowing across her face.The dr's at Mayo told her she was not a candidate for the treatments they had,and she would live with this the rest of her life,any treatment might cause the pain to reroute itself and become worse.A dr at KU Medical in Kansas City thought otherwise,she had a stroke during the procedure that they did not catch and sent her home.Of course 12 hours later she was back,worse then before.In 1993 a dr at Duke University had a procedure just for her,he learned it at the Mayo Clinic,he severed the nerves at the brain stem,a week later she was released,she got 30 miles away and had to go back.Another week later she left with a 40% loss of hearing in both ears and prisms on her glasses so she could focus,oh yeah,the pain was there,worse and different.Now she lives on medication,she has started college courses to learn to be a writer.After they lost everything they owned and went bankrupt( independent truck owner operator) I started a business a couple of years ago to help supplement her disability and his social security.They keep living,and trying,and now I feel better getting these words out finally.Thank you Name: Cherie I have been suffering from Atypical facial pain and Tregeminal Neuralgia for 10 years. Severe pain behind my eye, like molten lava. I could not eat, chewing was unbearable. I had to stop going to the dentist, I could not bear to have my teeth touched. I had extreme pain brushing my teeth. I couldn't even stick my tonaue out to lick a postage stamp.I had trigger points on my face as well. Even the wind at times would intesify my pain. My pain was chronic, hence the atypical part of my diagnosis. I could not take Tegretol, severe allergic reaction. I have been on ever increasing doses of Dilantin and Neurontin. Neurontin was 2700 IUs as of OCt 00. The pain during the year of 2000 was intensifing, the medication was not helping. I wanted to die. I missed so much work and just could not function. My daughter researched and found a procedure in which Gamma Rays are used to shrink the blood vessels surrounding the Trigeminal Nerve. I was skeptical but willing to try anything. Nov. 13 I went into the Neuroscience Institute of NJ. I did not have immediate relief. It was very suttle improvement for weeks. On January 19, I woke up with NO Pain. First time in 10 years I had absolutely no pain. I also decreased my meds by two thirds and am weaning myself off them completely. I am very hopeful that I really might have beat this thing. Feel free to email me with any questions you might have. Name: JARL I WAS DIAGNOSED WITH TN IN DEC. OF'97 BY AN EARS,NOSE, THROAT DR. AFTER TRIPS TO TWO DENTISTS. I WAS PUT ON TEGRETOL-MINIMUM DOSAGE BUT GRADUALLY INCREASED TO 1800-2100 MG./DAY. AS SYMPTOMS GOT WORSE THEY ADDED NEURONTIN,VICODIN,AND AMYTRIPTOLINE (SP.?). I WAS UP TO 18 PILLS A DAY. ZOMBIED OUT! I HAD 2 BAD "EPISODES" 6/98 &6/99. I WAS BEDRIDDEN FOR A WEEK EACH TIME BECAUSE JUST WALKING SET OFF MAJOR PAIN. BY JANUARY OF 2000 NOTHING WAS WORKING. IT WOULD TAKE ME 45 MINUTES TO EAT A PEANUT BUTTER SANDWICH. I DIDN'T LOSE ANY WEIGHT. I ATE ALL DAY LONG. SMALL BITES ALL DAY LONG. I CALLED THE MAYO CLINIC HERE IN MINNESOTA AND GOT IN IMMEDIATELY. IHAD 3-4 DAYS OF TESTS. TONS OF MRI'S. AND THEY FOUND NOTHING CONCLUSIVE. THEY EXPLAINED THE DIFFERENT SURGICAL PROCEDURES. MY NEUROSURGEON WAS A FIRM BELIEVER IN MICROVASCULAR DECOMPRESSION SO THAT'S WHAT I DECIDED TO DO. HE EXPLAINED THAT IF THEY FOUND NO CLEAR CUT CAUSE, THAT THEY WOULD SNIP THE NERVE AS LONG AS THEY WERE IN THERE. ANYTHING WAS BETTER THAN THIS. I HAD THE SURGERY ON MAR. 3 2000. ALMOST A YEAR. TOTALLY SUCCESSFUL. AS SOON AS I WAS COHERENT ENOUGH I REALIZED I HAD NO PAIN. I ALSO HAD NO NUMBNESS. WHAT A FEELING. I CRIED. MAYBE I CAN HAVE MY LIFE BACK NOW. THERE WAS AN ARTERY UP AGAINST THE NERVE AND A BLOOD VESSEL WRAPPED AROUND IT LIKE A BEANSTALK UP A POLE. THEY PUT A TEFLON PAD BETWEEN THE ARTERY AND THE NERVE AND SNIPPED THE BLOOD VESSEL AT EACH END AND CAUTERIZED THEM. AT MY SIX WEEK FOLLOW UP HE TOLD ME THAT THIS IS SUCCESSFUL 70% OF THE TIME AND 70% OF THOSE ARE LONG TERM. BUT HE FELT THAT BECAUSE MY SITUATION WAS SO CLEAR CUT THAT HE FELT MY LONG TERM ODDS ( 20 + YEARS ) WAS EVEN BETTER THAN THAT. I STILL HAVE THE HOLE IN MY SKULL WHERE THEY WENT IN. I HAVE 2 HOLES FOR MY EYES, 2 HOLES FOR MY EARS, ONE MORE WON'T HURT. ALTHOUGH I WONDERED. I HAVE A GARDEN CENTER AND MY FIRST DAY BACK AT WORK I WAS LOADING SOMETHING IN A CUSTOMER'S TRUNK AND THE TRUNK LID FELL AND HIT ME IN THE BACK OF THE HEAD. BY THE WAY, I'M 46, MALE, AND THE PAIN WAS ON MY RIGHT SIDE. IF ANY ONE WANTS TO E-MAIL ME THAT'S COOL. MY TWO SONS AGES 11 & 10 ARE MY SAVIORS IN THIS WHOLE ORDEAL. AND NOW WE CAN DO THINGS AGAIN. IT'S GREAT GETTING YOUR LIFE BACK!!! Name: TINA B FINALY GOT TO A NEW NEUROLGIEST AND WAS GIVEN DOXEPIN AND ALPRAZOLAM . I FEEL SOME WHAT PREETY GOOD .I CAN EAT AND THE JAW CHATTERING SHAKE THING SEEMS TO BE GONE BUT FOR HOW LONG IS GOING TO BE A WAIT AND SEE. WHEN IT GETS BELOW 70ISH IT SEEMS TO MAKE ALL THE PAIN WORSE AND AWHILE TO BOUNCE BACK FROM THE SPELLSOF ELETRICAL FIREY SHOCKS AND THE FOREVER FROZEN FACE . THE WEATHER MAN HERE IN DAYTONA SAYS IT MIGHT BE IN THE UPPER 40S FOR THE WEEKEND. SO I GUESS THIS WILL BE A TRY OUT FOR MY NEW MEDS. ! AM I IN FLORIDA?OR WHAT? WE CANT EVEN COUNT VOTES .., O. J. IS DOWN ELEIAN GONZALLAEZ SURELY NEVER A DULL MOMENT HERE . I HAVE THE 60TH ANIVERSERY OF BIKE WEEK COMMING IN MARCH AND I AM RIGHT IN THE MIDDLE DAYTONA. I HOPE EVEN THOUGHT WE DO NOT HAVE A HELMET LAW HERE THAT MOST BIKERS WHERE THEIR HELMETS.. I WISH I HAD ONE ON WHEN THE 18 WHELLER SLAMED MY DODGE RAM CHARGER. . MUST GO FOR NOW BUT SO FAR THE NEW SCRIPTS ARE WORKING (1 AND A HALF WEEKS ). STILL STANDING TINA B. Name: Judith I'm 47 and have been dealing with this disease/syndrome for twelve years now. I can tell you when it began but I haven't a clue why. It was like one day I was a normal person and suddenly in the middle of the night my life changed. My pain covers the right side of my face along with some very uncomfortable sensations, the most prevalent being a tingling that feels like a mask or tape covering the skin, it almost feels numb though the skin still feels my hand when I touch it. There are the shock-like stabs, but it is mostly constant, burning, aching pain that seems to have worsened over the years. Thankfully, I do have relief with medications, my only problem is the stigma of using a narcotic for pain relief. Sometimes the comments, made by pharmacists and other members of the medical community hurt almost as much as the pain. Believe me, I hate the feeling of being dependent on any kind of drug but when it is the only thing standing between agony and having a life I'll take the latter. I never want to go back to that kind of pain again. It changed everything about me, the way the world looked, how I felt about myself, plus I had three little children to raise. I empathize with everyone who has this and am appalled that so many still haven't gotten the relief they deserve. Keep pressing on, it's your life and it's wrong for you to hurt like that. I have raised my children and am grateful that these three medications kept me from being the basket case I surely would have been. How much better it would be if this were something you could put before the doctor and say, "there it is, this is what I mean when I say it's killing me, by degrees, everyday". But they can't really see it, can they, not like you do, and they know it's not going to kill you which should make you feel better but it doesn't, you just want your life back, you want to be like you were before, like, it seems, everybody else.
Name: Sammie I AM SEARCHING DESPERATELY TO LOCATE SOMEONE WITH TN THAT HAS A COLD FACE. I READ SO MANY STORIES LAST NIGHT. THIS WAS MY FIRST VISIT TO YOUR WORLD, OR SHOULD I SAY OUR WORLD. MY FRIEND SAW ME IN SUCH A STATE OF HYSTERIA SO MANY TIMES THAT SHE TOOK IT UPON HERSELF TO LOOK FOR HELP ON MY BEHALF. SHE PHONED ME AND WAS SO EXCITED. SHE SAID, "SAM YOU ARE NOT GOING TO BELIEVE THIS." I HURRIEDLY WRAPPED MY HEAD,LEAVING A PEEP HOLE, AND RAN TWO DOORS UP THE STREET.(I DO NOT USE THE PC.) MY LIFE WAS IN EVERYTHING I WAS READING. THERE IS SO MUCH TO TELL, BUT RIGHT NOW I NEED TO KNOW WHAT IS MAKING IT SO COLD AND WHAT CAN I DO TO STOP IT. I'M MANAGING THE PAIN, BUT MY EXTENSION CORD ONLY GOES SO FAR, LOL! I REALLY NEED YOU! I AM WAITING TO HEAR FROM YOU, SAMMIE Name: Sammie I feel your pain. I have read many of the narratives at the TN support section.Somebody's was the first to mention a freezing face. My face feels like ice. I know that I have TN, also TMJ. The many doctors I have seen do not have a clue as to why my face becomes cold. I am able to manage the pain with a combination of medications. Is there anything you or your doctor can recommend, or is this aspect even originating from the TN? My quality of life is going downhill. I can't go into stores or other publiuc places, because I have to wear a hood or mask everywhere I go. Please help if you can! Name: Debra Hi! My name is Debbie and my husband has had Trigeminal Neuralgia for 10 years.At first he was taking Tylenol Extra Strength but it did no good. He took too many and he had a black and blue mark on his stomach. He tried hot wash cloths. Nothing The doctors prescibed Baclofin, Tylenol 3( the ones with codine), Ultrims. Nothing worked. He went to the Universary of Penn.and the doctors said that surgery would fix it. He had a MRI and the doctors said it's not in the brain it was in the face and they couldn't do anything. He went to Cooper Hospital in Camden, New Jersey. The doctor prescribed Tegretol. It worked like a charm but he had to stop taking it cause he was allergic to it!!He had bruises up and down his arm. So we were back to square one. Then we went to a pain management doctor. He gave my husband a nerve block. It lasted for about 6 months and then he'd have to go back for more treatment.The doctor then said that they have a machine thatwould burn the nerves but it would leave one side of his body numb for the rest of his life. The day finally came but the doctor couldn't get the machine cause it was too costly to purchase. Then one day the doctor told us of a new medication that might help. The doctor and I quote,"it's like discovering America!". So my husband gota free 30 day supply and it was the best thing he never felt!!No more pain!!!!!!! The medicine is called Trileptal. It's made for people who are allergic to Tegretol. Now he 's his old self again. He's eating normally and enjoying life. And like the doctor said"It's like discovering America!!",and it is! Name: Betty Hi: I have just finishing reading the Neuralgia info on your site. The inermittent pain that I have had off & on over the past 10 yrs. explains my pain but it is not in my face or ear, etc. - it is on the left side of my head behind the ear. Doctors have not been able to tell me anything & once about 10 yrs. ago I had a CT Scan or MRI (don't remember which) and nothing showed up. Pain pills help the pain but I would like to know what causes it. Do you have any info about this or know where I could find info on the Internet? Thanks for any help that you may give me! Name: TINA B . ME AGIAN THE LAST COLD SPELL OVER X MASS REALLY PUT ME DOWN AND ALOT WORSE IN ONE WAY BUT NOT IN EVERY WAY.I GOT A SPELL THE DAY AFTER X MASSI WAS SICK FOR FIVE DAYS NON STOP IT MUST BE THE COLD ON MY FACE I DONT KNOW . I GOT A DOCTORS APT NEXT WEEK AND WILL PLAY CAUTCH UP AGIAN BUT MY LAST SPELL .... MY JAW STARTED A SHIVER SPASM AND IT HURT MY JAW THE CHATTERS THING I CALL IT SO I HELD MY JAW TIGHT WITH BOTH HANDS AND THEN MY LEGS TOOK TURNS LIKE SHAKING BACK AND FORTH SOMETIME BOTH . THAN POFFF THE DEMON WAS GONE. THAT I WAS SICK BAD FOR FIVE DAYS I COULDNT HOLD ONE THING DOWN I WAS GETTING SICK EVERY TWENTY MINS OR SO DRY HEAVES AND THROWN UP HURTS YOUR JAW BY THE WAY OUCH.I HAD TO EVENTLY FORCE MY SELF TO GULP 1 2 GLASS OF WATER TO FORCE JUST A COUPLE MOUTH FULLS IN THE REST BACK OUT. THE LAST TWO DAYS I DRAGGED MYSELF WITH THE HELP OF MY BETTER HALF TO THE HOTTEST TUB OF WATER IN THE HOUSE AND SOAKED THRRE FOUR TIMES A DAY I ALSO EVEN THOUGHIT IS AGIST THE LAW WHERE I AM AND MAYBE I CAN CHANGE THAT SOME HOW ANYWAYS I SMOKED POT AND THAT SEEMED TO HELP WITH MY FOCUS .TWO DAYS DOING THAT AND POFF THAT SPELL WAS OVER. BUTTHE POT SEEMS TO HELP ME BE ABLE TO AT LEAST NOW NOT THROW UP AND KEEP BOOST LIQUIDS DOWN AND FOCUS MY SELF .AWAY FROM THE PAIN MY BODY IS IN AT THE TIME. MY LAST SPELL WAS TWO NIGHTS AGO IT LASTED ABOUT 20 MINS HALF HOUR?? JUST THE CHATTERS AND LEG TREMORS . BUT IT DOSE NOT HURT . I CAN TALK THROUGH THE WHOLE THING MY JAW DOSENT NEED TO MOVE FOR TALIKNG. JUST THE TONGUE. LIPS HELP MY BOTTOM LIP IS SPENT SO I MIGHT SOUND LIKE IM SLURRING BUT . OH WELL . IT DONT REALLY HURT AS LONG AS THE PEOPLE THAT MAY BE AROUND YOU KNOW WHAT YOU ARE GOING THREW. CUS IT SEEMS IF THEY DONT UNDERSTAND .THEY FREAK OUT WATCHING YOU. I HAVENT SLEEP IN ABOUT FIVE DAYS . I MAKE MYSELF LAY DOWN AND AT LEAST IF MY HEAD CANT RELAX AT LEAST MY BODY THINKS IT MIGHT BE RESTING . HOUR OR TWO AT A TIME . . I REALLY HOPE TO GET TO SOMEBODY .DOCTOR I MEEN. MY SHORT TERM MEMORIE IS NOT TOO GOOD I HAVE TO MAKE A LIST OF MY WHOLE DAY . I FIND MUSIC REALLY REALLY SEEMS TO HELP ME BLOCK OUT SOME OF THE PAIN . MY NEIGHBORS MUST THINK I AM NUTS. IVE BEEN HERE 11 YEARS . FROM NEWENGLAND. MY OLDEST GIRL IS IN A GIFTED STUDENT CLASS. SHE TESTED UOT OF REG CLASS IN KINDERGARDEN AND MY OTHER IS JUST IN KINDERGARDEN. BUTWHEN EVERYBODY IS OUT IN THE BIG BAD WORLD THE MUSIC IS KINDA LOUD. BUT WHATEVER FLOATS YOUR BOAT RIGHT???? I FIND FOR ME SMASH MOUTH ALL STAR C D EVERY RUSH SONG I HAVE ALL THEIR C D S AND THEY ARE MY FAVORITE BAND EVER. ALSO THE CHILLY PEPPERS FOO FIGHTERS BEASTIE BOYS RIGHT NOW I HAVE CALIFORNACATION PLAYING WITH THE BIRDS IS A GOOD SONG FOR ME.. . I CANT SLEEP AND HAVE HAD NOTHIG TO DO CUS SOMETIMES I CANT BE NOTHING BUT LAYING DOWN AND THINKI SO SINCE I GOT MY BELL RUNG FROM THE TRAILER TRUCK AND I STILL CANNOT REMBER THE FIVE DAYS OR NOT EVN THE TRUCK CUS IT JUST CAME DOWN THE ROAD INTO ME WHEN I WAS STOPPED. I REALLY THINK THE MOST IMPORTIAN THING YOU SHOULD PROTECT IS YOUR BRAIN BECAUSE NO MATTER WHO YOU ARE OR WHERE YOU WHAT YOU OWN OR LOOK LIKE EVERY BREATHING THING NOT JUST PEOPLE YOUR BRAIN IS ALWAYS BRILLANT.EVEN IF YOUR " SHELL" IS DOING WHAT YOUR BRAIN IS TRYING SO HARD TO MAKE IT DO. YOUR BRAIN IS ALWAYS BRILLANT. BUT THATS JUST ME. I FIND THAT THIS FACE PAIN AND ALL THAT HAS MADE ME KINDA LIKE UMM MEEK I GUESS AND ITS SO EASY TO LAUGH AT THINGS LIKE WHEN EVERYBODY COMPLAINS ABOUT THEIR STUFF ITS LIKE HA HA YOU DONT HAVE A CLUE WANNA BE TINA FOR A DAY EVEN ?? ITS AN ODD WAY TO LOOK AT LIFE BUT I AM STILL HERE . SO FOR ME I GUESS IT WORKS . GETTING A SPELL COMMING SOON I THINK . I WRITE AGIAN . PLASE WRITE CUS EVEN IF I CANT SIT UP TO TYPE I STILL CAN USE MY EYES TO READ AND THE COMPUTER IS MY WAY OUT OF MY HOUSE . THANKS YA ALLL STILL STANDING HANG IN Name: Linda I'm just getting over my 1st episode - THANK GOD - and it sounds very much like TN (except that the severe pain is aching, not electrical). Tegretol did have significant effect after Vicodin ES had none. We're going to try me on Carbitrol though, as Tegretol did cause me to be semi-zombie at times. BUT, my neurologist doesn't want to put any diagnostic label on this- AND MORE IMPORTANT he doesn't really seem interested in hearing about my symptoms or the progression. Does anyone nearby (I'm in Broward County) know of a doctor who CARES about this awful thing that, unfortunately, is not going to completely leave me? Name: krissy I have suffered from tn for 3 yrs.Had salivary gland removed Dec.1997, had my jaw and neck thrown out of position due to that surgery, and have had severe, chronic pain ever since. Tried accupuncture, chiropractic, and many,many meds, w/ little relief. I am seeing a new neurologist Jan.30,2001, to try and get another opinion, if it even matters after all the drs.I've already seen. I will keep you posted. I will also keep you all in my prayers, as your not alone. God bless you all. Love, Krissy Name: Jane Hi everyone! Glad to find this informative site. My story in a nut shell: Sept. 99 GP diagnosed water in ear, soon after headaches (excruciating started), went to ENT who diagnosed TMJ. Next to DO who diagnosed Occipital neuralgia. Neurologist who was just plain clueless but gave me nerve blocks for pain in occipital nerve. Only lasted short time. Was on Pamerol for pain management-no help. Soma-no help. Percocet-no help. Anti-inflamatory meds also. Currently on leave from work, daily headaches with acute facial pain around temples, cheeks and jaw areas-worse when sitting or lying down. Had cat scan, MRI, blood work. Only problem was in C5 and C6 area of neck-bone spurs. Neck terribly stiff....upper back pain. Chiropractor doing ultra sound treatment to stimulate tissue around nerves. Anyone relate? The facial pain is a daily thing and extremely painful. Times I feel overwhelmed and getting depressed. Tired of going from doc to doc. I want my life back!!! Thanks for reading and any responses greatly appreciated!! Jane Name: Ellen A. Johanson In 1985 when I was 35 I started to take Ibuprofin for what I thought was a tooth ache. I finally went to the dentist as the pain became worse. The dentist couldn't find anything definite and through a long course of events as the pain became worse I ended up in the emergency room a couple times one night and was eventually hospitalized. Only then was I diagnosed with trigeminal neuralgia. After overdosing on tegretol for a week or two I ended up being pain free for exactly 15 years and in all honesty, never gave it another thought. Then, in October 2000 "tooth ache" came back and I just didn't make the connection to what had happened 15 years ago. Two dentists and an endodontist assured me that I needed a root canal in a tooth that was already capped. $666 later I still had the pain. By this time the pain was so bad that I did, in fact, make the connection with what I had 15 years ago. I had to beg the endodontist to refer me to a neurologist and even then had to wait. While waiting the pain became even more unbearable. I finally went to urgent care where I received the trigeminal neuralgia diagnosis again and got some immediate relief with tegretol . Neurologist confirmed the diagnosis and increased tegretol. I then had a severe skin reaction to tegretol. Tried something else with same results. Now on neurontin and pain is tolerable but not gone. I am tired all the time, memory is shot and I'm trying to live a normal life. The fear that any moment I will get another knife slice from my ear to my bottom teeth is almost paralyzing. As I read your stories it is as though I am reading mine - walking the hallways at night while crying in pain; crying myself to sleep; trying to cover up the pain in front of friends, co-workers and loved ones; wanting life back; living in fear of the next sear of pain, and worst of all considering the alternative to living in pain. I feel as though I am in really good medical hands with my doctors and their nurses, but this web site is a blessing as it provides so many ideas and resources. Thank you all. My wish is that no other person ever would have to go through even a minimal amount of this type of pain Name: Christina Where to begin. I am currently 35 years old, and my symptoms go as far back as my teen years. They were always the same. Severe shock-like stabbing pains in my right upper cheekbone area with simultaneous pains in my right shoulder. They would only last a few seconds and go as quickly as they had come. They would go into remission for years at a time. Until a couple of years ago. Suddenly I began having pains so severe and longer lasting that they would nearly knock me off my feet. They were in the same distribution as always, but much more frequent (daily, several times a day). I had to pull over while driving at one point, which prompted me to visit a neurologist. My neurologist's first impression was Atypical trigeminal neuralgia or atypical facial pain. He treated me with Tegretol. The pains continued to increase in intensity and frequency, and lasted longer in duration. Also, my physical exam showed a decreased sensation over the right side of my face, the same side as the pain. I had an MRI which was normal, other than an incidental finding of empty sella syndrome. My neurologist ended up adding Neurontin to my regimen. This slowed the pains down some, but the combination of meds made me so incredible tired. At the same time, many other symptoms were cropping up. Weakness, fatigue, Lhermitte's sign (shock-like pains originating in the back of the neck and traveling down my spine), dropping things, memory difficulties, etc. They suspected MS. An MRI done a year later showed a possible area of early ischemic change/increased area of focus only on one film. It also showed a possibility of a CSF leak. My medication had been changed at this point to Topamax to see if the tiredness would be any better. It isn't. I still have breakthrough pain on the medication, and when off the medication I have several attacks a day. Occipital neuralgia was mentioned because of the radiation to the shoulder, and the Lhermitte's sign. However, the pain is not constantly a throbbing pain. It comes out of the blue without warning and is excruciating. That is my story. No happy ending at this point. Feel free to write. Name: Lisa About 15 years ago, when I was 26, I started having occasional sharp, stabbing pains in my lower right jaw area. After a couple of years it became bothersome enough to go to the doctor. He sent me to an oral surgeon for x-rays to rule out anything else, then diagnosed it as trigeminal neuralgia and prescribed amitriptyline. That kept it pretty well under control for several years. I had occasional flare-ups that could usually be controlled with Tylenol. Then last Spring it flared up really badly, so I went to my doctor and said I'm ready to do anything to get rid of it (I've also started having some pains in my cheek). He sent me to a neurosurgeon at Rush-Presbyterian-St. Luke's Medical Center in Chicago, who prescribed Tegretol. It's been working okay, but I am trying to get pregnant, so I can't be on Tegretol. I am scheduled for radiofrequency rhizotomy in a couple of weeks. I am feeling pretty positive about it; I wasn't looking forward to being on Tegretol for the rest of my life. I guess mine is somewhat atypical in that it doesn't seem to be triggered by anything, and while it's painful enough to bring tears to my eyes at times (I call those "cattle prods"), it's not as severe as what I've read others have suffered with. I'm interested in hearing from others who have had radiofrequency rhizotomy. Name: Tina B. IN JUNE OF 99 I WAS REAR ENDED BY A SEMI TRAILER TRUCK WHILE STOPPED IN A SCHOOL ZONE.I SOMETIMES FEEL UNGREATFULL FOR COMPLAING BUT KNOWING I ANIT ALONE WITH THIS IS GOOD.I ENDED UP WITH A BROKEN NOSE 18 STITCHES IN MY FOREHEAD AND MY BOTTOM JAW BROKEN IN THREE DIFFRENT PLACES.I WAS WIERD UP FOR 12 WEEKS.THEN AFTER COMPLIANING AND X RAYS IT HAD NOT HEALED AND WAS REBROKE .MY ORAL SERGON PUT THREE STEEL PLATES TO HOLD MY JAW TOGHTER.THAT WAS IN NOV. OF 99. I WAS A BOOST FAN HA HA.I CANNOT DESCIRBE THE PAIN EVEN JUST TO PUT A STRAW TO MY LIP, OR WATER ON MY FACE ,AIR MY FROM OWN BREATHING. THE PAIN, AND FEELINGS CANNOT BE SAID WITH WORDS. AFTER THAT I HAD TEETH WORK DONE .I SHOLUD MENTION I WANTED ALL OF MY BOTTOM THEETH PULLED OUT AND A PLATE OF FALSE TEETH FOR MYSELF BUT .... I GOT 2 TEETH FILED AND A BRIDGE ON THE TOP . THEN 3TEETH FILED DOWN AND A BRIDGE (4) PUT INTHE BOTTOM LEFT SIDE .ANOTHER ON THE RIGHT SIDE TOO. THAT BRINGS US UP TO WHERE I AM RIGHT NOW. I WAS TOLD I HAVE ANESTHESIA DOLOROSA . MY WHOLE LIFE IS CONTROLLED BY THIS. I AM MARRIED14 YRS WITH TWO GIRLS 6 AND 9. THE DAY OF THE ACCIDENT I WAS GOING TO GET MY STATE LICENCE FOR DAY CARE.NOW I STRUGGLE IN MY HEAD TO BLOCK OUT PAIN TO GET THROUGH A GLASS OF WATER (AT ROOM TEMP.) OR WASHING MY FACE AND BRUSSHING HA HA . TALING , SMILING HURT . I MISS KISSING SO BAD AND GLAD I GET THEM EVEN THOUGH I CANT RETURN THEM THE SAME WAY. I HAVE NEVER HEARD OF ANESTHESIA DOLOROSA AND DESPERATLY NEED ANT INPUT WITH ANYTHING OR ANYBODY LIKE ME. I WILL BE DOING RESEARCH ON LINE. AND WILL WRITE TO EVERYBODY WHEN I COME UP WITH SOMETHING . THANKS FOR LISTENIG(: !!TINA B. Name: Lisa In August of 2000, I began having pain from what I thought must be a cavity or some terrible dental problem. Thankfully, after examination, my dentist suggested trigeminal neuralgia because he had had a patient with this condition in the past. I believe he saved me a lot of time and pain because he was familiar with this condition and I did not undergo unecessary dental work, etc. I was lucky to be referred to a neurologist fairly quickly, and in the meantime, my doctor prescribed tegretol for the pain, which was getting worse. The tegretol worked great for the pain, but for about a week or so I was very fuzzy. The neurologist kept me on the tegretol and things were going fine until December when the pain hit me again but harder and longer than before. My doctor increased the tegretol, no help. Then he added neurontin. Then he increased the neurontin. Then he added Zoloft. I'm still in pain and it's getting worse. I'm afraid of how much worse it can get. My neurologist wants to try some different drug combinations and dosages to try to bring the pain under control. Sure hope it works soon! Name: Dave D Hello again fellow pain suffers and supporters. I am writing again to say that this is the year that I take my life back from this extreme pain. This is a bold statement considering that I hurt so much I can barely see the screen. I have continued in vain to take medications (the usual anti ... inflamitories, convulsives, depressants). I had considered taking them just to get another hours sleep. At times I consider what is worse, having side-effects that keep me about one step from being a freakshow or just feeling like a freakshow from the pain. I feel like the right side of my head is about the size of Texas. I know that I have to cope for my wife and son. Their love has kept me here on the earth. I have read every comment on the page from year 2000. Congatulations to those who have relief. I am so happy that something can help someone. To all of my other friends in pain, do not give up ... WE are in this together. Someday, somehow, somewhere ... someone will be able to help us. Please share with me. I understand and am here for all. Good luck and God Bless. Name: Lisa In August of 2000, I began having pain from what I thought must be a cavity or some terrible dental problem. Thankfully, after examination, my dentist suggested trigeminal neuralgia because he had had a patient with this condition in the past. I believe he saved me a lot of time and pain because he was familiar with this condition and I did not undergo unecessary dental work, etc. I was lucky to be referred to a neurologist fairly quickly, and in the meantime, my doctor prescribed tegretol for the pain, which was getting worse. The tegretol worked great for the pain, but for about a week or so I was very fuzzy. The neurologist kept me on the tegretol and things were going fine until December when the pain hit me again but harder and longer than before. My doctor increased the tegretol, no help. Then he added neurontin. Then he increased the neurontin. Then he added Zoloft. I'm still in pain and it's getting worse. I'm afraid of how much worse it can get. My neurologist wants to try some different drug combinations and dosages to try to bring the pain under control. Sure hope it works soon! Name: Dave D Hello again fellow pain suffers and supporters. I am writing again to say that this is the year that I take my life back from this extreme pain. This is a bold statement considering that I hurt so much I can barely see the screen. I have continued in vain to take medications (the usual anti ... inflamitories, convulsives, depressants). I had considered taking them just to get another hours sleep. At times I consider what is worse, having side-effects that keep me about one step from being a freakshow or just feeling like a freakshow from the pain. I feel like the right side of my head is about the size of Texas. I know that I have to cope for my wife and son. Their love has kept me here on the earth. I have read every comment on the page from year 2000. Congatulations to those who have relief. I am so happy that something can help someone. To all of my other friends in pain, do not give up ... WE are in this together. Someday, somehow, somewhere ... someone will be able to help us. Please share with me. I understand and am here for all. Good luck and God Bless.
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