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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: Eric I'm ashamed to say that this is the first time I'm signing in, although I've had bouts with TN since 1996. During times when I thought I was cured, it almost seemed like it would be a jinx to sign in. Had my first MVD around 1997 - gave me about 3&1/2 years of peace. Condition crept back in leading to a glycerol rhizotomy and another MVD shortly thereafter (both in 2002). It seems like the TN is creeping back in and I'm distraught. All thoughts welcome. Any word on whether gamma knife treatment is getting better? New drugs in the pipeline?
Name: Misty Hi...its almost 9 pm on Christmas eve. I'm a 26 year old single mommy of a two and a half year old little boy. I am a school teacher, have my own home, a new car. My little boy just opened two dozen Christmas presents and sits alone in my living room floor playing with a BOX! :) I wrote my personal story for the first time about this time last year. I was recently separated at that time, recently diagnosed with TN, had a small child, working full time, and taking graduate classes....I thought I would DIE! Actually, I wanted to die. Thankfully, my TN went into remission this past spring. I had 8 GLORIOUS months of little to NO PAIN!!!!!!! Then, the season changed...temperature started getting a bit colder....and WHAM!!!!!!!!!!!!!! It started again back about a month ago. Eating pizza with my little sweetie turned Mommy into a raving lunatic. What is so terrible about this disease is that you never know when its going to "HIT". I have a dull ache on the right side of my face, particularly my jaw, temple, nose, and both the bottom and top teeth. It is as if an imaginary line is drawn right down the center of my face. The left side is completely painless. This pain I can handle. It is the other, more severe ATTACKS that make me want to bash my brains out or rip my jaw out of my face!!! As equally distressing is the fact that non-Trigeminal people just DONT UNDERSTAND!!!!!!!!!!!! How do you explain to a potential date that you can't go out with him because you're afraid "it" will happen????????????????????????? You can't. So you stay home, alone. Many would say I am a beautiful woman, I am a former pageant queen, very loving and great with children. It's true...until "it" happens and I lose all sense of what is happening, what I'm doing...I know I look a mess, a terrifying mess...walking around with a hot towel on the side of my face, wearing my pjs at 3 pm, mascara running down my face. This is not who I want to be- its just who I have to be...and I hate it. I hate it every bit. I want my life back, I want to be the person I was before. I want to LIVE, not simply cope. Name: Bob I am 52 and have had TN since 1987 (age 36). The first year was bad until I got a proper diagnosis. At first, I was told the lancing pains had something to do with my chronic sinus & allergy problems, then maybe a tumor. Once those were ruled out, an ENT suggested I see a neurologist who positively ID'd it as TN. I have had fair results until now with meds, but it may be getting worse. I am having a harder time of it now, even at high doses of Trileptal. Tegretol was ok, but I did'nt like having to check blood all the time. It’s much better with Trileptal (only need to check once or twice a year). Neurontin makes me groggy, so I ask to use it only when I have to. My pattern (until recently) has been 3-6 months of pain followed by 9-12 months pain free (remission or meds). I have not had a good remission in about 3 years. I had a very good doc until this year. He no longer wants to deal with insurance companies, however, so I had to go to someone new. I don't much like the new doc, so I am looking for someone better. I was at a moderately high dose (900 mg) when I started with the new doc. I had been at this dose for over six months. He wanted to try reducing my dose, despite my misgivings (still getting phantom twinges). After 2 weeks, my TN rebounded with a vengence. Now I am at 1200 mg of Trileptal and 300 mg Neurontin and still don't have it under control after six weeks. Hurts pretty bad about 1/3 of time, ok 1/3 and 1/3 in between. I am a facilities engineer at a large company. I deal with many people and am constantly busy. TN presents a challenge as I have no intention of giving in to it or killing my career. Despite the pain, I have not lost a single day to it in 16 years, though I sometimes work longer hours than most to keep up. I live in central Maryland. I am married with a 16-year old behaviorally challenged son. My family has been both a hindrance and a blessing when I am afflicted. My wife really does not know how to help, though I assure her caring and patience with me is enough. Both of them are high anxiety personalities who do not handle stress well, so I hide the worst of it from them. Their care and hopes for me, nonetheless, sustain me when I feel the worst. When the meds are in control or the TN's in remission, I feel good. I have a robust constitution, which helps. When I am well, I like to work on cars & machines, sail, read, write political essays, listen to classical music, make repairs to my house, and play basketball with my son and his pals. Name: beverly Hi, You may have read my story I wrote awhile back when depression was my best friend. But a lot has happened, my husband has threatened to leave me because in his words he cant take it anymore, how nice, i am in unbelievable pain and he can't take it anymore!!! my neurologist just wants to keep doing tests, that never show anything and give me stronger trileptol 400mg 4 times a day, I tried the pain patch, big mistake it about killed me, he was mad because that didn't work. so i am back to square one trying to find some one to help me with this pain. I except now that they do not know what to do to make this go away, but I don't understand why I get treated like a drug addict when they set there and tell me my pain is real but they wont give me anything to make this livable. I just don't understand...I have been on all the meds for atypical face pain and they just don't help, they just make me crazier.. where do i turn to now? why do they treat us like drug addicts? Why do they just want to mess your brain up so you can't think or drive or carry on a conversation. can anyone help? Name: zackie it all started when i got a new set of dentures i wore them 4 months in that time i got saw temples blurred vision and nausea i was just so sick then the ringing started i'd been to every one then i went to my dentist and he said get the new teeth out i thought it would be all over but it wasn't the ringing got worse the nerve was damaged i didn't know i was going mad someone do something it is still going to this day i can't find a cure i hate waking up 6 yrs later help me zackie Name: Deanna I am a 37 year old female going nuts from pain. It started about 6 weeks ago, I ended up in a local minor emergency room due to ear and face pain. I was diagnosed with a sinus infection which i'm very prone to and put on an antibiotic. I took the med til it was all gone. No relief. I called my dr and went in, he agreed it was a sinus infection and prescribed another round of antibiotics. By this time the pain was unreal and unbearable, my face actually gets all distored when the pain is at its strongest i simply can't function and all i could do was cry so he also gave me tylenol 3. Finished this antibiotic as well and i'd swear the pain had only increased. Went back to the dr and he decided I just needed a stronger antibiotic, put me on levaquin and changed the pain med to lortab. The levaquin only made me feel worse to many side effects to list plus no relief from the original pain. I decided i should get a second opinion from an ENT so i made the appt. got in very quickly i think being in tears when i called helped. ENT looked me over said he seriuosly doubted it would be a sinus infection since the only sypmtom i was having was incredible pain. He decided to look up into my sinus cavity and see what was going on. BADDDD misake. He got the scope up there and sent me into the worst pain imaginable. He removed the scope, looked at me like he thought i might attack him and said well i can tell you there is absolutely no sign of sinus infection at all and no sign that there ever was one. He called a local Neurologist talked my symptoms over with her and came back to tell me he thought and she agreed that i have TN. Gave me a prescription for Neurontin and set me up with an appt to see the nuerologist the following week. I saw her last Thursday, she agreed it is definitely TN and upped my dose of Neurontin added Ultram for the pain, kept me on Lortab for the pain as well. I've been taking the full 1800 mgs a day for the past 3 days to no real relief. I think it has cut the sharpness of the pain but really nothing more. It still attacks me at least 4 times a day and the attack seems to always last 3 to 4 hours, shooting hot jabs directly into my cheek bone, seering pain from my temple to my chin, jabs hit me beind my eye, under it distoring my face as it goes, i've even had the seering crushing pain down the right side of my neck like hot fingers are grabbing it and pulling my head down to my shoulder. I notice that the pain only effects the right side of my face, its weird i can NOT touch the right side of my nose without feeling intense pain and yet the left side and down the center of my nose there is no pain at all,same on my chin. It is still horrible, I still can not sleep at all, I'm tired...but laying down in any postion only brings the pains on. I actually fell asleep sitting in bed last night around 4am, my husband thought about waking me up since i was half bent over and he thought i'd surely have a sore neck when i woke, but decided that since i was finally asleep he wouldn't disturb me at all. I actually slept for 3 straight hours, the most i've slept consecutively in 6 weeks. I just can't believe that as much meds as i'm on i can't get any relief. Is this common? Are there any meds that truely work? Any suggestions on how i can cut the pain, deal with it? I'm going nuts and my family, while they try to be supportive, is very tired of me being in this condition, not to mention my co workers, i've missed over a week and when i am there i'm in tears. I'd love to hear from anyone that might be able to tell me this will get better...anyone that has any suggestion on dealing. thanks for letting me vent. Name: mohamad 3 years ago a little pain used to happen round the teeth in the left side when I ate. It came and go. 2 years ago the pain became stronger and I had to see many doctors to examine the teeth, the ears..etc. Last year the pain became unbearable especially on a very cold winter night, on which I had to be out. The following day I had to see a doctor, dentist, he saw nothing with the teeth, but I insisted that he must uproot the 3rd upper teeth, the one I thought the pain was coming from. He did. Next day I was back, because the pain was back. Finally, he discovered that the 5th nerve was the cause of the pain, and because I asked him to CUT the pain even he had to CUT my head he injected the nerve with Alcohol. With tegretol and neurontin I had, you can say, a stable condition, but nowadays, the pain is back, I hardly eat, or swallow ,or talk pt seems that my drugs became ineffective %100. I do not like to go through Alcohol experience again, nor to take a surgical risk. Name: kim Hello to all. I've been meaning to write about my experience for about a year, but honestly have just put it off because I don't like reliving the pain. Then I think about how my story just might help someone who is going through what I went through. My pain started about 5 years ago with shooting pain through the right side of my face. I was unable to eat much, and sometimes would have pain while talking. I went to the dentist like so many other people, thinking I had a tooth problem. Luckily they did not extract any teeth and performed no root canals. I ended up loading up on ibuprophen, which did not help at all. A few months later the pain stopped, and life went on as normal. About 3 months went by and then with no warning, it was back. Worse than ever before. Simple acts like walking, brushing my teeth, talking, washing my face, putting lipstick on, became the things I dreaded the most. No one understood my pain, and I'm sure some were even scepticle of the severity. How could I blame them? No one that I knew, including myself, had ever heard of anything like this. After finally being diagnosed, my doctor perscribed neurontin. It didn't do anything. Even after increasing the dosage....nothing. After being referred to a nuerologist, we tried several different meds, including lamitcal, dilantin, and others I don't remember. He had to raise the dosage so many times, that he thought it was time for other options. He then referred me to a specialist in Kansas City. I tried injections into the side of my face twice, and the Gamma Knife. Niether one of those ended up working. The final option my nuerosurgeon wanted to try was surgery. I was desperate, and at that point would have tried anything. I simply could not function in everyday life. We sceduled the surgery for that following week, and I believe it was one of the best decisions I've made. Although enduring a lot of pain from the surgery itself, my TN pain was gone! Three weeks later, I slowly started back to work, and normal life. That was 1 1/2 years ago, and have had no TN pain since then. The only pain I have is a tender spot on my head where they made the incision, but that is pain I can definitely live with. I hope my story gives someone some hope or even encouragement. The one piece of advice I have is not to give up. I didn't, and am now living pain free. Name: Rosie Hello,My name is Rosie, and my story started in October /2000. One night before supper, I started having a pain in my lower back teeth bottom right side, and a pin pricking feeling in jaw area. I swore this felt like I needed a root canal. I went to the emergency dental clinic he took x-rays, and couldn't find anything to justify the pain. He just said that there was a little decay on 1 tooth, to go and see my family dentist. The next day I did so, He fixed the tooth that needed filling, but I was still in pain with the back teeth. I went back and forth to the dentist, he changed all the amalgam fillings on the lower right side of my face. He checked for a cracked tooth, he sent me for a special x-ray, there were no tumors. He started to do a puplectomy, and referred me to an Endodontist, the Endodontist couldn't find anything dental related. So they thought maybe TMJ disorder. I wore a mouth guard at night for 1 month,at times I do clench my teeth, but with no relief of this pain. I am wearing a TMJ appliance constantly now, with no relief in pain. The dentist's say its not dental related. After about 2 weeks in the beginning, my face started aching along the cheekbone, I started have ear pain, feeling of fluid in my ear, a burning feeling in the jaw area and bad headaches. I have seen to date 4 Ear, Nose and Throat specialists, and they keep saying because my hearing is good, and they do not see any fluid in my ear that I am describing, that it is not my ears. I have had 4 hearing tests, a ct scan of the TMJ, an ultra sound of the jaw area where the nodes are, at first I said that at times those nodes under the jaw area just ached, and on the ultra sound they thought that it could either be a mass or another node ajacent to it. When I had the ct scan it ruled out any masses. I have had a MRI of the brain. With no findings. I have see, 3 neurologists , 1 referrred me to a psychiatrist, because at that time I lost my mother to an illness. So they thought stresses related to that. The psychiatrist diagnosed me as having ATYPICAL FACIAL PAIN. The other neurologist was at a pain management clinic, and he was interested in treating the headaches. This last one says he agrees with the others its a combination of migraines and neuralgia. I have been on imitrex for migraines, and their very costly at $20.00 a pill. But cost is a far cry if I could be pain free. Any ways these pills I have tried have not taken my pain totally away. My symtoms are still the same, some days are better than others, I get headaches, facial pain,at times it feels like something is pinching a nerve, also right behind the jaw feeling of pressure as if something is blocked. If there is anyone who has the symptoms of the feeling of fluid mostly in the right ear that comes and goes and sometimes the left can e-mail me so I know i am not going crazy. I alo now get a burning sensation more so now than before, down the sides of my jaw at times it just feels like an infection is there. I would be more than happy to read and learn what I can, because going to these doctors, yes they have been thorough, but now its like it must be in my head because they can't find anything. I know what I am feeling, and the medication doesn't help. I have been to a chiropractor / naturopathic / accupuncture nothing helps. So when does all this pain go away, anyone been diagnosed with this know to tell of when this pain leaves? I have been on Neurontin now for 6 months, I take 2 400mg 3x a day,and the neurologist wants me to start coming off them slowly to see if the pain goes away on its own. Let me tell you as soon as I started decreasing my pills, I am feeling the pain come back again, so I guess I will see the doctor again. Sorry about venting, but had to get this off my chest, been living in agony for almost 3 years now. Have had the course of blood work done also. Please share your story.
Name: Charles I would very much like to hear from someone who has experienced total numbness and burning sensation all over face & numbness inside mouth, including tongue. This began in July on one side of face only and gradually spread all over face. Doctors have eliminted MS, and ALL tests have been negative; have had every test imaginable. My neurologist is treating it as though it's somehow related to the Trigeminal nerves, but he says he has never seen this before. He has mentioned acupuncture and hypnosis which means he doesn't know what the problem is. I have been on neurontin for two weeks with no relief so far. Has anyone heard of this? Please help. Name: Sharon I am a 43 year old woman. To make a long story short, I was diagnosed with atypical facial pain two years ago with most of my pain behind the right eye and forehead. I saw a surgeon in May and he told me that there was a chance that a glycero rhizotomy injection may help relieve the pain behind my right eye and that the worst side effect could be a little numbness. Needless to say, after surgery I thought I was going to die. I had the worst pain in my forehead and down into my right ear. I am numb in the cheek where he inserted the needle, the right side of my tongue and the bottom four teeth, and oh yea, I have pain with numbness. I am interested in the results of anyone out there who has had this injection or if you know of anyone who has had it. Name: Simong I now have a Trigeminal Neuralgia site, have a look at www.mytn.co.uk Name: Suzy I had a facelift in 2001, For the past year certain things have been getting bad, I am sensitive to odors, perfume, etc., I cant use my hands for long, loud noises hurt my head, I can go on and on, now I am out of work and don't know how I can ever work again with all these painful symptoms, I need some support can you help me, I am quite young in 40's and don't know what to do, I lost my job and insurance and need some mental support if anyone is going thru this and how you cope with it, is there hope?????? Thank you, "God" bless, Susan
Name: Robert E. It's been a little over a year since I have quit smoking. As a result, I have had no severe attacks of trigeminal neuralgia in the last eight months. This is the best thing I have ever done!! Smoking apparently was restricting the flow of blood to my brain and thus causing these severe attacks. So if there are any smokers out there with this problem, quit ASAP!! Name: Charles V. I have been diagnosed with atypical facial pain--EVERYTHING else has been eliminated. The pain is on both sides of my face, and my face is totally numb including inside my mouth. I can only eat very soft foods. The pain in with me 24/7. I take 1 vicodin at night which allows me to sleep; I could take more but choose not to do so. The pain began on July 8 & has increased in intensity since then. I go back to my neurologist on Nov. 20 after 8 weeks of taking Lamictal, which has had no effect. Has anyone experienced pain & numbness such as this and is there any relief? I would very much like to "talk" to someone who can share their story. Name: "Ruth" Name: S The stories I read about TN bring back such terrible memories, but my story does have a happy ending. My mother began having pain on the right side of her jaw when I was a little girl. I can't bring myself to even retell the whole nightmare, but it lasted throughout the 1980's. Her suffering was so horrible, and it seemed like the doctors were actually against us. Nobody believed my mom, they thought she was crazy. We had no support. One quack almost killed her by manipulating her jaw in such a way that it brought on an attack so bad that she subsequently refused all liquids and nearly died of dehydration before my father dragged her to the emergency room. It seemed to be a little comfort to her when a doctor friend of ours commented on her strength and said he was sure there were times when my mother WANTED to go crazy. She agreed. It seems now like some horrifying dream that didn't really happen, but of course it did. I truly believed she was going to die from this disease sooner or later. I lost all faith in doctors. I think being having a family member who is suffering so badly and being unable to do anything at all for them is in some ways almost as bad as having the disease itself. But then again, I always felt guilty feeling sorry for myself when here my mom hurt so bad. She's never admitted it, but as bad as it was, I'm pretty sure she wanted to die. She finally got an injection of glycerol in the nerve when I was a senior in high school. It worked for a year and then the pain started coming back. Then she had the procedure done again, and this time thank God Almighty it was permanent. That was over ten years ago. It is as if she were reborn once the pain was gone for good. All of a sudden I discovered that my mom was a happy person and a really, really funny one. I love talking to her; she's one of my closest confidants. I just think it's a terrible pity that I didn't really get to be "mothered" by her, because she was in too much pain to talk to me very much until after I had already left home. They say that that which does not kill us makes us stronger. Today me and Mom are the two toughest cookies I know. As far as treatment goes, Tegretol helped for a while but didn't cure it and started causing liver damage. The TNS machine helped for a while but didn't cure it; eventually she gave up on it, I can't remember why now. Chiropractic care helped but didn't cure it. Only the surgery "cured" it. The right side of her face is numb, but she gladly accepted that to get rid of the pain. I think both of us usually block out most of our memories of that time; there's just an occasional reminder when I tell her she was a kernel of corn on the numb of her face. But now she's able to eat corn on the cob again! ;-) By the way, her triggers were breezes, anything touching her jaw or mouth, cold. I wrote this story because I feel so bad for all of you who are going through this now. My mom came through it on the other side although it was incredibly difficult; have hope that you can, too. Good luck. Name: Annette I don't know where to begin. One day my life changed. I thought like everyone else that I had a killer tooth ache. I went to the doctor - he told me I had TMJ and that my only solution was breaking my jaw. After I left - I decided that it was time for a second opinion. The next opinion was that it wasn't my teeth - that I should see a neurologist. This seemed strange...but the pain was so severe that I decided to go to a specialist. After a MRI and catscan - it was determined that I did have TN. They immediately put me on Tegretal & Prozak - which I had a severe reaction to. They then put me on ibuprophen and began talking about surgery. I am scared....I have two small children, I am only 34 and have been suffering with this for a little over a year. It's much worse when the weather turns cooler - but it's always on the brink - just waiting to surface. Any suggestions - I have tried some alternative treatments - Nonni juice that is supposed to help with pain - it seemed to help - but I have no way of gauging it...since the pain is always there. Has anyone thought about BOTOX? I am just wondering - if this would deaden the nerve - even if temporarily. I am going to ask my doctor about that this week. Thanks for listening. After reading the other listings - It's comforting to know that I am not alone. Name: Leslie After two years of being told that the stabbing pain in my face was sinus related, the doctors are just now looking at trigeminal neuralgia. I don't have an official diagnosis yet, and in fact even the neurologist agrees that the only real consistent things in my diagnosis are the location and severity of the pain. Yet he still presumes trigeminal neuralgia. One of the reasons why I plan to do so much research myself is that I live in a fairly rural area, and I don't trust that the neurologists in this area have the breadth of experience to know what other things it might be, or the depth of experience in treating this particular condition. I'm looking for others who might have some of my other symptoms that are not consistent with "classic" TN. For example, my pain is not better at night, and it's not "triggered" by touch. For me, the pain starts slower, more like a toothache (teeth and sinus problems have been totally ruled out at this point), but within 24 hours I am completely incapacitated for days. This last episode included significant swelling on the painful side of my face (as if it were an abscess, but again there is NO tooth pain and NO infection of any kind). Now almost two weeks after the swelling has gone down I still have one spot on my face that if I touch it, it feels like my face feels when novocaine is wearing off, but it's not painful and doesn't trigger pain. Also, when I look at the history, it's come on gradually for me (2+ years) but was always diagnosed as sinus; only in the past few months has the pain been this severe, though, so it's clear that the episodes are getting closer together, longer, and a lot more severe. I'm searching everywhere and I can't find anything that puts this kind of swelling during an episode or this kind of tender spot with TN. My neurologist is also going to look for a posterior fossa tumor when I get the MRI in two weeks (2 weeks?? I want it NOW!), but he still presumes it's TN. I would love to hear from others who have any of the same atypical symptoms that I do, both to find out what has helped and to find out if it turned out that you had any associated conditions, and just to connect and provide mutual support!! I've never imagined being devastated by pain the way this pain kicks me down. And I'm glad to find support resources online. Name: Amy Name: Tom Hello to all and keep the faith, I started out awakened one night 5 years ago or so and wondered what the heck was that? I had these quick jabbing electrical shocks and didn't have a clue. I went to the dentist and he said I needed a filling. Maybe I did need a filling but the pain came back 4 or 5 months later. I let it slide that time and forgot about it for a period of a year or so while in remission. It then came back stronger than ever, I took a week and a half off work, went to a good dentist who said nothing was wrong with my teeth, next day went to a not so good dentist and he gave me a root canal and pulled my wisdom teeth on the TN side.I guess I should of listened to the good dentist but I couldn't stand the pain and wanted it gone now. I thought life was going to be good after the dental procedures but as I was healing from these dental procedures, TN struck like a thief in the night. I was pissed, called the dentist and told him what I thought of him. I should of sued him or something or maybe not. I then went to my doctor who prescribed tegretol, it actually did some good I think, I do have some shocks from time to time but I deal with it for the time being. I probably went a good year with no jabs. I also went to homeopathic medicine and accu-puncture during this time. I figured I would try anything. I don't know how severe my TN is. I do know that I haven't got the answer as to why it happens. I am extremely paranoid about rubbing my face on that side and sleeping on that side which seems to trigger a few quick jabs from time to time. I was awaked while on business a few months ago with pain just as bad as ever. Scary,Scary,Scary. I get it from time to time and it is always on my mind. I guess after reading some of the stories that my TN is not as bad as others or maybe it will get worse when I am older.I hope not. I am 33 years old and pray that something can be done so that I can quit worrying about it. Thanks for listening to my story. Please don't give up and think positive. I will try to also Name: cindylouwho I am 38 years old and was just diagnosed with TN last week. It all started with sinus infections with my eye hurting, the pain would go away when the infections went away. Then the eye pain stayed when the sinus infection was gone. I then had two sinus surgeries to stop the eye pain and infections. Needless to say the eye pain continued and constant migraines and cheek pain. Than two months ago I started having pain in my bottom jaw and neck. Was referred to a neurosurgeon who said I have atypical TN and gave my an increasing dose of tegretol. It still is not taking the pain away and is giving me migraines. My pain is increased by reading and working on the computer. Does that happen to anyone else? Any suggestions would be appreciated. Name: Sheila Hi All, I've noticed some patterns with my neuralgias, so want to comment on them as they may be pertinent to research or self-discovery. First, I have Atypical Neuralgia (as long as I can remember), and also Trigeminal Neuralgia, that did'nt begin until around my 30's..or let's say, show it's stronger presence. As a woman, I have noticed my attacks to be usually cyclical with my menstrual cycles. Men too have "cycles" of homonal/chemical changes within their body. So mark your calenders and see if there is somewhat a pattern. The atypical neuralgia since childhood also seems to involved a swelling inside the skull on the left side. I will have an increase in heat in that area, and increased body heat. I suspect a relation to the pituitary/hypothalumus region of the brain. I also have another neuralgia that became apparently strong after a series of injuries...auto accidents, child abuse and blows to the head on one side. This appears to be related to certain head movements affecting vertebrae/or facets putting pressure on nerves, or pulling on nerves from scar tissue or damaged muscle/ligaments. I've also noticed neuralgia pain occuring from nerve pressure from vertebrae in other areas of my spine (again car accident injuries). When the vertebrae are "re-aligned" the pain disappears. I feel subtle pressure on the spinal cord can account for some neuralgias. The problem is with diagnostics. CAT/MRT/XRAY's all look at the spine when you are "still" and in a "straight" position. They do not show what happens when you move in certain ways. I have found sleeping positions, sitting positions, neck positions, lifting heavy objects, pushing and pulling all contributory to the onset of pain attacks. I have also used these experiences to determine experimental positioning for relieving the pain, with some significant success. Allergies: I also have allergies that trigger of the childhood atypical and the trigeminal neuralgias. These consists of : Perfumes/colognes/fragrances/pot pourri/ air freshners, artificial scents of any kind. Also aerosols such as Hairsprays, Air Freshners, Cleaning products, Lysol. Also: Tobacco smoke/products Also: Paint fumes, glue fumes, paint thiners, finger nail polish remover, car exhaust fumes. (I also have migraines triggered by these substances) Further, I am very sensitive to electro-magnetic fields. High power lines, computers without adequate VDT protection, rooms with large amounts of wall electrical wiring, MRI's, some battery operated devices. And I am also light sensitive especially to fluorescent lighting. Dental Procedures: I did notice my condition worsen with Lidocaine injections, and felt nerves had been directly damaged my needle placement. I strongly feel that Lidocaine causes more problems then the medical/dental community objectively observes, or is willing to admit to. My best helps: *Body positioning, relaxing nerves and reducing inflammation along the spine. (Look into the "Alexander Technique") *Cold compresses placed around the back of the neck just under the skully base. I use cold wet washcloths held in place by a large towel wrapped around my neck. Sometimes I place wet cloths in the freezer for a few minutes if I need them coldler. Much better than an ice pack. I also use them to the front or side of the facial area/skull, sometimes alone or in conjuntion with the skullbase wrap. Sometimes hot/warm compressess in these areas, and a combination of hot/cold, one back, one front, as you know the "color" of neuralgia always changes. (also try applying cold/warm wraps along other areas of the spine) Bio-Freeze Pain Relieving Gel...Heaven on Earth I call this one. I apply this over the nerve areas being affected. May make you tear and your sinuses run initially...be sure to let these clear before attempting to drive, as this product has strong mentol. It contains a mild toxin that "numbs" the nerves somewhat. Be sure to hit the temple area with this one, as so many nerves and pain come from that region, or relay back and forth with that area. (Hint, I buy the "sample packs" as you can carry them in your wallet, purse, and easily in the car for emergency pain relief) Anbesol Extra Strength topical tooth pain relieving gel: Truthfully, Lidocaine type products and I do not get along, and this product does damage skin tissue, but for the longest time before Bio-freeze, I used it to numb over the nerve areas, by applying it to the outside of the face of the nerve close to the nose in the forehead areas, the nerves in the cheek or maxofacial area, and temple area. I like pain cremes and those that contain menthol and cayenne pepper. I sometimes find help taking cayenne capsules (feel free to open them and cut the dosage if too "hot" for you) I try to relax with Echinacea Tea. Pepperment tea can be soothing at times as well. Ginger Tea actually reduces prostaglandin production (prostaglandins are those little chemical nippers that cause lots of pain in the body..especially for women...gals Ginger Tea is great for menstrual miseries as well.) Motrin: This is controversial. Sometimes this helps. However, I find I am having burning nerve response pain down my arms and fingers now when I take this, and question whether years of use of Ibuprofen drugs have contributed to nerve damage and the Trigeminal Neuralgia. (I also feel nerve damage from antibiotic use has occured as well) Auto-immune system disorders run in my family genetics: Rheumatoid Arthritis, Diabetes, MS, mega-allergies... Have much more to write but not feeling well today, so will continue on with "Theories" on another date.
Sheila
Name: Irma Hello Everyone, I have been reading your stories today with hope. I guess I should start by saying I am perfectly healthy TG. My mom on the other hand... She was, 8 years ago, a vivacious woman. Scorpio. Full of life and very very good looking at 43. On Valentines day my aunt called saying that my mother had had a stroke. I rushed to NYC to find my mother at Mt Fiore Hospital with all kinds of tubes all over her. Ever since then our lives have been an emotional rollercoaster. NO ONE can say what she has..it was a mini stroke, not a stroke at all, its fibromyalgia (sp?), its MS , no its just migranes...so on and so forth. My mom has terrible head pains, NO NOT HEADACHES!! ...she describes it as a painful pressure/throbbing pain on the base of her scull. It gets literally hot. So hot she melts ice packs in minutes. Her face becomes very hot, numb and painful. She has lost feeling on the left side of her face, left leg, arm and foot. In the past year she's started having trouble breathing. so was it a stroke? who knows...just spoke to the last doctor that saw her. She said it may just be Trigeminal Neuralgia. Not life threatening at least and her "attack" responded very well to Tegretol. But she does have to come in for the 50th MRI (I swear she's about to glow in the dark one of these days) and an ER. She's had Cat Scans and spinal taps (yes a few not just one), xrays, blood tests, monkey tests, eye exams... and has been given every pain medication under the sun. You name it, she's taken it. I'ts a miracle she's not a junkie. She also doesn't speak english very well which makes things even worse. I sure hope this is the difinitive diagnosis. I'm tired of telling her story to every resident we see at the emergency room and then go home distressed with another prescription for Tylenol with Codeine. Thanks for "listening" Name: Robert I hate myself Name: ruliree Has anyone been treated with the new drug tamapox. I recently went to another neurologist and he added it to my treatment of neurontin, and elavil. I just wonder why he did't up my elavil or neurontin instead of adding another anticonvulsive pill. It got me scared. I still have break through pain. I'm on oxycontin, but I'm taking myself off of it. I told him about the rude treatments I get from doctors when they see that drug. I ask for percocet for the break through pain and he said he doesn't write out narcotics. So that's why he precribed me tamapox. There's bad side effects to this drug also. Alot more worse then neurontin. I'm very depressed because I fear the pain will become worse once I'm off of the oxy. I also asked him how much of the oxy if helping me compared to the other two treatments. He than quoted 'that you don't want something masking pain'. HELLO, what does he think the neurontin and elavil do. I have intractable pain. I'm no futhure with finding out what is causing this except that they might have ruled out TN. I was put on oxy through pain management in Mass, but recently moved to S. Fl. I just saw this new neurologist and it's funny, but he directed his explanation to my hubby and not me. He was a meuslem, not that I'm against that, but I have to wonder about his treatment. I'm down right scared. Why can't these doctors understand me and my pain. We need this added treatment, but it's so hard to get. Oxycontin is so bad at the moment because of Russ Limbaugh and his admitted pain killers addiction that it's making it hard for anyone here to get any type of pain meds. I'm so over all of this. At times, I wish I could die. I'm a grandmother and I'm a young 51, but to live the rest of my life like this, I don't know if I want to. I've been crying since yesterday and I can't seem to stop. I'm constantly in fear of that horrible bone crushing pain returning once I'm off of the oxy. If anyone knows or is being treated with tamapox, please email me ASAP and let me know what you think. Or can give me a doctor referal. God bless us all, Abbie Name: Helen I've had TN for about 15 Years, but seems like forever. Right now it rules my life. I was lucky because I was dignoised after aa year or so. Took tegratol, even though many times I vomited it right up, then I heard of Dr. Jenetta, so had my MVD. It was fine for one year & then I fell & had to have my 2nd one. I was without pain for about 5 years, then it struck again. Finally heard of the Gamma Knife & just before that procedure, it attacked the other side of my face, also. Had Gamma Knife & seemed to work fine, but other side developed atypical TN. Suffered so with that, by this time I was on nuerontin. This seemed to work best with me, but the demon appeared once more so bad. The heard of glycerol drip. That worked for about a year & half & then had it again, but this time did not work as it left me with a very sensitive right side & a dropped jaw. Right now I'm in Speech class to learn to eat again with jaw out of place. It is doing better, but they have told me there's nothing else to do, but more mediation. Right now, I'm on 4800 nuerontin. If there's anything else out there, please let me know. I'll try anything!! Name: Chris Hodgson AAARRRRR HELP I have just been told(2 days ago) I have TN on my left hand side, its triggered when I lay down on either side. The lack of sleep is driving me round the bend. I'm on Tegretol 600mg a day, and they seem to make me feel like falling to sleep on the spot. I have no problems with it through the day except on a cold day the side of my face goes dead ( better than the night pain). The Tegretol takes the edge off the pain but does not stop it at all, so i get about 2-3 hours sleep a night. Any advice on what can be done to treat/help me to get some sleep would be most welcome. It was nice to see that I was not the only person with this condition, as trying to describe the pain you feel to my family was impossible, but this site has helped. Name: Bill I am a 37 year old golf professional and father of 2 beatiful boys Alex 8 and Garrett 4. My wife Margaret has helped me get through the last two and a half years of my life. It started with an twinge similar to biting down on your fork while eating dinner. I thought nothing of it. Later that week it turned into a twang and then while giving a helpful golf hint in my office I thought my tooth had cracked in half right as I was speaking. I quikly ran to the dentist and he was beside himself with all the testing to find out what was causing me such pain. Finally he concluded it must be GUM EXPOSURE!! Thank God! I said!, and away I left with absolutely no relief. Actually it was more painful applying the cream that was doing nothing for me. I soon decided this was not what I had and it occurred to me that this dentist was younger than me and could not have had that much experience even though I was giving him the benefit of the doubt. Next I went to my wife dentist who had a bit more experience. My conversation on the phone with him convinced him that I had TMJ which at this point I had never heard of but it sounded closer to what I was experiencing. He put me on a muscle relaxer and had a mouth plate made up to wear at night and this worked for about 6 months. The pain came back with a vengeance. I went back to the same dentist but he was not available so I saw his associate. His associate was a bit more educated in this area of TN and thank god I had and episode in the office. He quickly concluded that I did not have TMJ I had TN and I needed to start taking Tegretol. Well this was another turn of events. So I read up on TN and Tegretol and I guess the Tegretol concerned on its potential side effects so I decided not to take it. I fought through the pain stubbornly and I ended up having a skeletal muscle pull from tightening up my body so much when the spasm would occur. I don't know about all of you who have this terrible disease but what I read is that the spasms would last from a few seconds to a few minutes. At its worst I would say I was having spasms for up to 15 to 20 minutes. Anyway I ended up waking up one morning not being able to breathe so I went into my doctor that morning and he told me about the skeletal muscle pull. Again probably the stress of the visit brought on a spasm and he asked what the heck was going on and I began to explain as I am doing now. He quickly confirm that I had Tic Deleliruex. He then put me on Tegretol and then I decided I better take this drug. I took the Tegretol for about a month and it knocked the pain out completely for about a year, but it came back. I quickly got back on the drug but it just didn't work like before. From there it's kind of a blur. I went to a neurologist for a consultation and he was encouraging as he put me on Neurontin. When I made my return visit one month later with no results he simply said I'm sorry but that's all I can do. I can refer you to a pain management office. So I did and they put me on another drug. I think it was topamax. I'm getting close to the end. This is tremendous therapy for me to actually trace my steps of this nightmare. Well, I was at my wits end trying to be a husband, father and a Head Golf Professional with constant social interaction that was beginning to look to me like the front line of battle instead of a fun day on the golf course. One day my shop manager was reading an article about a procedure that was being done in Palm Beach at Good Sam Hospital by a Doctor named Jordan Grabel. The procedure was Gamma Knife radio therapy. I called for an appointment he quickly returned my call and I met with him within the week. At this point I was having spasms 3 to 4 times a day and I dreaded the mornings. I had to start my day by physically starting the spasm by myself so that I could simply brush my teeth. Not the way I want to spend the rest of my life. I avoided conversations with the people that mean the most in my life and I know it was effecting them more then it was effecting and that is what is killing me. Anyway! Ironically Dr. Grabel talked me out of the Gamma surgery and decided that the Radio Frequency Rhizotomy was his real specialty and his highest success rate. It has been about 4 months since the surgery. The pain came back after about a week when I went off of all medications, but it was much less severe and lasted for only a few seconds. He told me to get back on the medication for a few days to bridge the gap and so far so good I've been pain free for two month. I want to thank everyone who has helped me to get through the tough times and believe me I know this thing could right around the corner. I guess the worst thing about this disease is the way is slowly changes your personality be it the medication, the anticipated bouts of pain or the loss of your quality of life you used to have. I am a firm believer in Dr. Grabel and I'm sure I'm going to get through this. Thanks for listening and I hope all your golf balls stay in the short grass. See you later Bill. Name: Gary I believed that my mother was suffering from Trigeminal Neuralgia,as her symptoms included:difficulty brushing her teeth,chewing,and inability to handle cold drafts. Nevertheless,doctors ruled this diagnosis out due to her additional major symptoms,which include:inability to talk on the telephone,as well as an inability to handle any noise such as background music and television.One common problem is that my mother always BURPS,when she attempts to talk on the telephone.The pain rarely subsides.She always wears a hat to avoid a cold draft as well as noise. In other words,my mother seems to be affected by---ELECTRICAL DEVICES. I would be grateful to anyone who can lead me in the right direction.Please email back. Name: anonymous on christmas day i had my first attack of trigeminal neuralgia.I put it down to there being something wrong with my teeth or gums.I again had two further attacks in march.The pain was sudden and excruiating lasting about 1 to 2 minutes each time but occuring up to 20 to 30 times on a daily basis.My first attacks happened when eating/chewing.The next attack occurred in july and lasted for 2 weeks.I realised then that coldness/draughts on my face triggered it too.The pain was burning,shock-like and twisting -just absolutely agonising.From christmas day i had also noticed that my right leg felt weak and i was getting continuous pins and needles in my feet and hands and in march i temporarily lost the sight of my left eye.I have since been attending both an eye specialist and a neurologist who have now given me a provisional diagnosis of multiple scerlosis.I am now awaiting an mri scan at the end of october to have this diagnosis confirmed.The tegretol tablets that i am now taking for the trigeminal neuralgia seem to be working well for me at the moment. Name: Cynthia Hello, I begin to have very bad sharp elcrticfying pains go thru my jaw thought it were teeth problems. Got to be so many a day so serve were afraid to eat and brush my teeth. Well the pain got to be so serve that had to go to the ER the doctor took a x-ray of my jaw it came back alright so she said probably had TMJ gave me taridol and viccoden for the pain. Well had went to the doctor in town she starts me out of gibtril taking one at nighttime well still were having the attacks so when I went back to her a week later she put me on Tegretol have to take them twice a day. Two days later back to the ER for the serve pain the doctor once again gave me taridol and viccoden then check inside my mouth thought had a bad tooth on top of the Trigeminal Neuralgia. So now besides having to take the tegretol, pain pills am having to take pencillian on top of it. On Monday were talking to my best friend outside and a breeze started to blow once again had a attack for three hours. Then last night beginning to have where my left side of my jaw go numb cant talk right or control that side of my face. Really am afraid to go anywhere or try to do anything because am living in pain or the fear of the pain. Name: "Phelps" Have had a toothache and earache for two weeks. I went to see my dentist and an Endodontist, both said nothing is wrong with the area, but I should have a wisdom tooth removed, that the pain could be reflecting from there. The doctor said that I have an ear infection and maybe TMJ, but didn’t know for sure. From what I read it sounds like I have a case of ATYPICAL TN, but I maybe going overboard. Though the pain is just plain awful. Has anyone thought it was TN, but it turned out just to be an infection treated with antibiotics? Or when a wisdom tooth was pulled the pain went away? Or something like that. Please help. I am at my wits end with this pain. Thanks, Phelps Name: Valerie I have had Trigeminal Neuralgia on and off for the past 5 years. However, I have been more on than off with the pain over this past year and it is getting progressively worse. My pain started on the left side of my face and centered around my nose. It has gradually spread from this trigger spot to my chin, forhead, eyes,upper lip, teeth and so on. It seems to rotate and I have the pain in just one of these places at a time. A few weeks ago I began having symptoms on the right side of my face as well. The pain seems to be changing from a lightning jab, to burning pain and then to a consistant nawing pain. I have gone through a host of emotional feelings, from despair to hope and everything in between. My faith in God and the knowledge that he knows all about this, keeps me going. He is the great physician. I find that the medications Neurontin and Tegretol,are not really working. They take the edge off, but do not get rid of the pain completely. I don't like the feeling of being in a fog, stumbling around all the time, forgetfulness and adding to that, involuntary movements of hands and legs (I guess you'd call it twitching). I have recently been considering surgery. I've heard great things about the Microvascular Decompression surgery and also Gamma Knife. These seem to be the golden standard for this condition, with lasting results, if not a cure. I am hopeful that in this, I will find the answer I've been looking for. I believe there is hope and it's important to keep thinking that way. As my Pastor keeps saying, "attitude is everything". Name: Jane I have suffered from A Typical for 8 years. This affects both side of my face but never at the same time, apart from the initial attack which was diagnosed as 'Sinus'. The pain is intermittant, 1 - 4 times a week, it is severe and often debilitating. I have no warning that an attack is about to happen. As you can appreciate, this restricts my forward planning, there is no such thing as a social diary because I cannot predict the 'state' of my condition. I can obtain some relief from Zomig, a migraine remedy, but this is not always the case. Pain can often last for 3 days followed by a 'free' day which is followed by pain on the other side of my face. Occasionally the pain see-saws for up to two weeks. GP's comments 'we don't know what it is, we'll concentrate on what its not'. MY comments, has anyone got a fairy godmother to spare. Name: leej To all here, My book, A Pained Life, a chronic pain journey, has just been published. It is an account of my personal struggle with trigeminal neuralgia and constant chronic pain. I have written it because, although each patient with facial pain may have a different cause for the pain and disability, the struggles are similar: to find the right doctor, the right drug, the right surgery, the empathy and the compassion. If you are interested, you can read an excerpt/it can be obtained through www.xlibris.com/APainedLife.html It is my hope that a personal account of the struggle, which we are all familiar, will help those outside the experience have a better understanding of what we deal with each and every day. And for those new to it, to know they are not alone. Thank you, leejcaroll Name: Beverly Hi my name is Pain, I am with you every minute of every day I am even with you at night to wake you so you know I am still here. I want you to think of nothing else but me, you cant play with your kids and you cant enjoy the sun and wind, I want let you kiss your husband of 21years and fall in love over again because I will stop you. Because I will hurt you if you try. But she has a wonderful husband who stands by her and holds her and cries with her when she does not want to live anymore... But I am going to make sure that she hurts everyday every minute it freezes my face or burns me from hell or the dreaded ice pick yea that always works. She has been to every doctor and they tell her she crazy or just a drug addict, oh no there's one who tells her she has tn, yeah, we can help you -- lets try the gamma knife it works 90% of the time let's give her hope so she maybe has a chance of the happy life she took for granted. she goes to wake forest and they put 4 pins in her skull, they tell her this won't hurt, they lied but that's ok cause after this She will be better. Done, it worked, sheer joy, no pain till three weeks later, surprise I am Back, Oh they say we are so sorry we just don't understand it should have worked. must be atypical lets put you back on all those "you may as well be a zombie cant drive or read or help with your kids home work because you're not sure what world you're in and the pain is still there" medicine. sorry we have other people's head to fry, you don't make us look good so let's try it on some one else. call them back crying sorry you need to go to some one else.....Your family just doesn't know what to do everyone is depressed, can't help mom she cries all the time, Mom - don't know if she can go on living, in pain causing so many people to cry and the rest of the family just thinks she should check in to a mental; ward because she just making it up..they say just admit it she just wants attention.....Pain i am still here what are you going to do, take pain pills and try one day at a time. HappyBirthday son you just turned 10 mom's crying.....If she gives up she looses everything and destroys her family's life. Her boys whom she loves with all her heart will not understand why she quit trying......I have made her turn against all her friends, how could they understand ,I hate them, they can still laugh and eat and look at me like i am some monster with my face all swelled on the right side the nerve running down my nose stands up like a worm going up my face. I even look at people's face and think if they only knew what it felt like to have a hammer beat you in the face. Why doesn't some one famous have this TN then we would have benefits and put the word out that there is this pain that destroys everyone in its path...I have thought about drugs or drinking but ia m sure that wouldn't help.. or would it I haven't found out yet,,,,just cant do that yet...but she will fight another day praying for a miracle where are you angel of hope I need you pleassssse. Don't let pain be my mate for life pleasssse....I go back to the doctor tomorrow for pain control meds my husband is going too he is soo mad at how I have been treated he is ready to go to jail for me. Oh God Pleassse Help us all with any form of TN. I am just 41 in a size 2. so many women will kill to be a size 2 but I would trade....she took a nerve pill just a little better another day is coming so me and pain have to do the house work iron the clothes get the kids to take a shower fix supper and hurt and cry some more..Some one out there has to HELP us all, Why arn't they helping us instead of using us for experiments oh sorry we didn't know it would make things worse,.....I have to make it through another day I just have too, I just have to, I just have to..My heart goes out to everyone of you who have wrote because I know how you feel..PAIN PAIN PAIN AND DEPRESSION are who we are..... bev Name: Bob This is an update to a previously posted story. I had my GK done on 2/28/98 and I remain pain and medication free. My procedure was done by Chris Duma at Hoag Hospital, Newport Beach, CA. I would be happy to share my experiences with anyone who may be interested. Name: "yolly" StoryIn april of 2002 i had a sinus pollen removed in my right size of the nose, was operating from it.Then they took out a small biopsy from nose to see if everything was alright, but it turn out that i had a tumor in my sinus not cancers but have to be removed. So in May 2002 the surgery took place. When finish i was send home with patches up nose. Within 2 weeks i had to return back so he could take out the patches up my nose. In a week i call him and told him that my cheek hurts my arm felt pain and numbness. He then said that while operating on my nose he touch a nerve but that it will heal with 3 to 6 months. Well i have one year and 6 months and been through different pain management doctors, rheumatologist doctors, neurology doctors and terrible pains. In January 2003 i was then diagnosis with Myofascial Pain Syndrome on the right side, and with Trigeminal Neuralgia, after so many MRI, Cat SCAN, X-ray, nerve test everything in the book for chronic pain. Some of my doctors tells me that he probably touch a nerve and that's why my side hurts. These pain have destory my life with me and my kids. Always in pain since morning till morning. Ia m know taking physical Thry twice a week from 9:00am till 11:30am. And know i am also trying to get a medical malpractice lawyer to sue this doctor that destroy my right nerve, because it was to take the tumor out of my nose but it was not to damaged my nerve and leave me with terrible terrible suffering pain. I never in my 41 years of age know anything about the sickness i have. So yes is an uncomforable feeling very painfull sometimes i feel nothing will take the pain away. Sorry but this is how i feel. Name: Carol My book, A Pained Life, a chronic pain journey, has just been published. It is an account of my personal struggle with trigeminal neuralgia and constant chronic pain. I have written it because, altho each of us has a different cause of our pain and disability, the struggles are similar: to find the right doctor, the right drug, the right surgery, the empathy and compassion. If you are interested it can be obtained through www.xlibris.com/APainedLife.html It is my hope that a personal account of the struggle, which is one with which all of us here are familiar, will help those outside the experience have a better understanding of what we deal with each and every day. And for those new to it, to know they are not alone. Thank you, leej Name: Lynne In the summer of 1999 I found out I had trigeminal neuralgia at which my doctor put me on tegretol & i've been on it ever since. It seemed to be working, i was even able to go off the medication for a couple months. but that was short lived! here in the past month yhe tegretol hasn't been working, & I thought if I took more when yhe pains hit it would make it go away,not true. so I went to the doctor today & she put me on neurontin.hope this works! I'm 34 & i feel like a prisoner when these pains hit! I'm afraid to walk across the room let alone drive my car.I live in newburgh In ,i'm also close to evansville In are there any support groups close to me? Name: David I was diagnosed with atypical facial pain on the right side of my head about 2 years ago. It all started in December of 1999 (3 1/2 years ago) right after I got real sick, the flu or something. It progressively got worse & about 9 months ago was about the worst it has been. I have seen doctors, neurologists, chiropractors, dentists, tmg doctors, ents and had physical therapy many times. I sometimes think it could be one single upper rear tooth that had a root canal many years ago. My dentist showed me the xray and the roots go way up into my sinus cavity, more so than any other tooth of mine. This tooth also gets a little sore when my right ear hurts & gets real plugged up. I may get it taken out. I have taken all the drugs, including Keppra which not many folks have mentioned. Nothing worked to take the pain away and almost all meds made me dizzy or tired. I have had all the tests, including numerous MRIs & CT scans with nothing found in my neck, sinuses or brain/head. I have developed my own theory & my doctor agrees with it. I believe my right sinuses were damaged when I got sick. They are now very sensitive and drain quite often. They get plugged up & this causes my right cheek to get sore, my right eye to hurt and right temple pain. My right ear is almost always plugged up and painful which causes me to continually try clearing my right ear by swallowing, etc. This continual attempt to clear my plugged right ear cause all the muscles in my right side of my neck to get tense & rigid which pulls down on the right side of my spine in my neck. This causes terrible pain in my right side of my face, my right temple & upper right side of my head, including very bad headaches. I also get sharp pains in the top right side of my head. At times I also get dizzy or feel sick, although these have got better since I am now taking two new meds mentioned below. The whole situation is cyclical and continually gets worse, then a little better after I massage my neck muscles with pressure point therapy I have learned to perform myself - it really helps! Here is the most amazing thing regarding the drugs I now take that really help -allot! I figured this combination of drugs out myself & my doctor supports using them in this manner. I use them moderately & they work real well. I now use about 20 Vicodin pain pills (generally half a tablet) per month and also take small doses of Valium. I don't use them every day sometimes skipping a few days. I use both as needed and almost always take only half a Vicodin when I need one for pain. I use the Valium when I feel the muscles beginning to tighten and the Vicodin when the pain starts to get worse. I also take them together sometimes. This combination really works & neither affect me mentally or do not cause drowsiness. I also definitely know that avoiding stress is very helpful. I know that working on a computer is one of the worst things I can do. I hope this may help someone else & look forward to sharing information & talking with anyone else. I also find comfort with my belief in Jesus Christ and his promise to take care of me through my troubles. Name: "Maddy" my husband has suffered atypical facial pain for many years. the only thing that brought temporary relief was magnesium. his pain is worse with talking and relieved by chewing. i wondered if this was common. Name: Lauren I am a 34-year-old female and went to see an orthodontist about clenching my teeth at night. I felt the problem wasn't too severe. I had seen this orthodontist before as a teenager in the mid-80's and trusted his work. Even then he gave me an upper splint for my jaw to open up. Then he put braces on me for 6-months due to two teeth crossing over my bigger front teeth. Although, the teeth never maintained perfection I still thought I'd give the orthodontist TMJ Specialist another try. In March of 2002 I met with him briefly and then he had me come back for an official initial visit of $40. The next visit he took pictures of my mouth but was vague about the entire procedure and what the expectations would be. I then paid for the new lower splint I would be wearing 24/7. My concerns were how can I wear this splint all the time, even while eating. I was frustated at first so I declined to wear it all the time until March of this year 2003. That's when I went to see him for the $65 visit only to hear "you have to wear this in order for anything to work." Those were his words and then he let me out of the door. So, I obliged and have worn it non-stop...24/7. It was strange at first--but I finally thought I would adjust and get use to this splint. I have adjusted and now I'm suppose to wear the splint during the day and another upper splint at night. The new upper splint cost me $250 as I'm suppose to wear this at night and never to be worn with the lower splint. However, I didn't realize the splint would cause me more pain in my jaw and more facial tension. He---the doctor said it's a 6 to 18 month process. No problem I thought, I can handle this....Until I noticed my upper tooth starting to move inward and the other front 3 teeth moving backwards in the mouth. His explanation is "we must correct the jaw and get rid of the pain by aligning the upper and lower teeth with this lower splint." He said, "if the teeth start moving around it's okay- we'll correct the teeth later by putting braces on you." So each time I bite down---- the teeth are aligning but in the long run it's also wearing down my lower teeth. Now I noticed the wearing down of my front lower teeth. In fact, when I brought this to my orthodontist's attention a week ago---he said, "you had that problem before you saw me." I love how he passes the buck. I know darn well the lower splint was putting pressure on my lower front teeth and that has worn away my tooth. I thought the pain was natural due to the jaw aligning. But in fact, the splint has worn away my tooth. It's noticeable. Yet, the orthodontist is in denial. That splint he sold me for $495 has grinded my tooth down. What I need now is proof his splint has harmed me more than helped me and need a second opinion. If anyone out there knows a trustworthy, honorable TMJ Orthodontist Specialist PLEASE LET ME KNOW! Overall, I've invested $1500 for proper TMJ treatment. I feel cheated and let down. Those may be strong words but for an orthodontist to take his entire staff on an "orthodontist seminar vacation" in mid-May of this year....to Hawaii...please let me know otherwise. I'll forgive the guy.....but now that the lower splint has grinded my tooth and he's in denial I don't want to have anything to do with the splints now or ever....WHAT'S WORSE....is the jaw has moved and I can't bite down now without the splint. It's scary to eat food without the splint. I feel like the food is mushy and I don't have control of my jaw and or where I bite down. I hear a click click click coming from my jaw. It is a little frightening... I guess I could wait it out for 5-months and let my jaw move back to the way it was and eat baby food for the time. Any suggestions? Like I said, if anyone knows a decent and reliable TMJ Orthodontist Specialist please e-mail me. Thank you kindly, laurenb2002@yahoo.com Name: Cheri Yes I also went to the dentist and my life changed I don't know what this is but I went for two long years from dentist to dentist without help. Then my sister ask the dentist could it be the trigeminal nerves and he said " you may be on to something" I just know that I am afraid of what the rest of my life has to offer. This pain has to stop. Why is it that so may people have been to the dentist and the dentist says " not my fault" and that is that. nothing else is done about it. There are too many people with the same complaint. I am not looking for money from the dentist I just want it to stop. I can't stand to live like this. Name: Pauline I started to have pain only three weeks ago and thought initially it might be due to an ear infection. I visited my GP who checked by ear and said it was clear but prescribed ibuprofen. Within one week the pain was worsening and I visited my dentist to check in my teeth and gums for problems - he gave me the all clear. However the pain had now become excrutiating and I knew something was wrong - I visited my GP again who diagnosed TN and prescribed Tegretol. I have been taking Tegretol now for one week and the pain has subsided considerably, with only minor medium pain attacks. Can anyone tell me what I should expect from this condition - how long I should remain on Tegretol, how long a remission might last? My family are very sympathetic due to the information available on the internet, however I just wish I didn't have this. I am only 37 years old. Name: "baiyun" Had sharp pulsating shooting pain from lower right back jaw going to the head. Occured after 1 month after my lower right impacted wisdom tooth extraction. At its worst, touching even my lips causes pain. Tried tregetol, initially worked as pain reduced but after that doesn't work. Did a root canal at tooth #31 as pain seem to originate from there and the dentist just refused to extract that tooth so did root canal instead. The thing is while doing the 2nd part of the root canal, the whole process was very painful, got pulsating pain going up from the back of lower right jaw. Had rhinitis, so took medicine for it and had about 1-2 mths had no more pain while taking the rhinitis medicine. Recently the pain came back after the medicine was changed. Wonder is the pain due to my rhinities instead...?? But luckily, the pain was more concentrated on tooth #31 and altho pain still shoots up but much more bearable then initial stage. Now going to try zostrix and hope the pain will recede. Any other cures or reduction of pain methods, pls share. Had enough of the pain esp when no one even the dentists and doctors just dun understand the pain i am going thru. Name: peggy It has been four years that I've been living with this disease. I'm just about had it. I'm on 1800 mg. tegretol - 80 baclofen and 900 mg neurontin. I am a mom with a 7 year old and a 14 year old. The last episode I wasn't even able to swallow without being in excruciating pain. Just yesterday, the same pain is breaking through. Now, I am faced with which procedure to have. If there is anyone out there who has had the Gamma Knife procedure please message me asap. It is truly the procedure I'm leaning towards. Wish me luck!!!!! Name: abster It started around October of 2002. I started to get mild to moderate headaches and some minor neck pain. At one point the pain in my neck and headache got a little worse so I went to the ER where they did a neck xray and head cat scan. CT came back normal, but neck came back with mild deteriation. No biggy. After a while I noticed that my headaches were getting a little worse. It stayed the same till around january when the headaches really got bad, along with some mild neck pain. I went to a neurologist who gave me midrin to take. Fortunate for me the headaches went away, but I then develope some sharp pain in the left side of my nose. He then put me on neurontin 100 mgs aday and increased to three of them a day. I wasn't diagnose at this point.At first it seem to work, but after two weeks, I noticed that the pain was getting worse. Along with the nose pain, I started to get pressure on the left side of my head. This went on for several months. I went to the ER at least once a week with out of control pain. A neurologist on duty diagnosed me trigeminal neuralgia and put me on tegritol that didn't help me at all.I went to ENT had mri/mra's done. Sinus cat scan and all were normal. Now the pain has spread to the inside left part of my palate. It goes in a pattern. Pressure, pain in the side of the nose for a couple of days, then to the left side of my palate. It seems that I'm getting a little strange sensation in the left side of my neck to. Strange skin sensations to.It also has moved to the back of the eye, but it runs a course. I always have break through pain every day. From a level two to a level six or seven. I'm taking neurontin 1,800 mgs, along with elavil 20 mgs, oxcycontin 10 mgs three times a day. The pain still comes and goes. I'm very scared that my life will be like this until God takes me. I just turned fifty and my whole life has turned upside down. I was a very active women. Working and going to the gym and just having fun and looking forward to my fifties. Now, I'm on hault. Work right now would be questionable due to the break through pain. I've seen neurologist whom seen to have washed their hands with me. Maybe they think I'm premenopausal and that it's all in my head. I've recently moved to S. Fl and if any one knows of a good neurologist please let me know. I'll probably have to be referred to pain management again so I can stay on the meds. I pray every day that God will take this away. At one point, I was considering ways to take my life. I didn't want to live like this. The meds make the pain tolerable at best. It's there every day and I don't care about addiction because it is the lesser of the two evils. Please email me at anytime with questions if need be. God bless all of us. Name: Marion I am hoping that you have already received my email on this.....please let me know..... Name: Dee After having several dental procedures within a years time,I have been left with and suffering from severe nerve pain in my face and jaw for almost three years now. I have been to several dentists and oral surgeons, and none of them have been able to tell me where my pain is coming from. I happened to go on a search on the internet about nerve pain, and discovered this site, and thank God I did. Today out of frustration, I finally made an appointment with a neurologist. Quite frankly after reading everyones stories on here, and learning that the medications that are being prescribed, don't seem to be actually curing anyone or releiving their pain very well....I've come up with some of my own ideas that I would like to share with you....and I think I am going to wait on that neurology appointment for the time being. After all I have read here, I have decided I am not going to go on any of the medications mentioned by others on this site....doesn't seem worth the time or the anguish. I notice not only do I have severe jaw and facial pain, but I also suffer from constant neck aches and headaches. I've already been to an acupunturist, and had two treatments. When he examined me, he mentioned how tight my neck and shoulder muscles are, and along with his treatment he gave me some exercises to do to improve my posture and loosed the muscles a bit. I've decided to try a chiropractor first, and get my neck and back into better alignment...go to a massage therapist, to loosen the muscles, and get onto a better nutrition program. Maybe if I can get back in alignment, and eat right to lower my blood pressure, and get my muscles into better shape from exercise and massage, the pain will lessen, or better yet dissapear completely. Has anyone else tried this combination? If so, let me know how it worked out for you. I'm gonna give it a shot...it's gotta be better than living medicated all your life. If it works for me...I will certainly write again to let my fellow pain sufferers know about it. Name: Vikki I fell and had a fracture with eye surgery about a year ago --- long story short, maxillary nerve damage. I've been really frustrated and upset. Many doctors are just blowing me off - telling me I suffer discomfort, not pain, and it will clear up anyways. The docs script neurontin and tell me to give it a few more months, and that's it. No guarantees, just this vague sense that I must be hopeful... I don't have exactly the same situation as many posters, but I appreciate being here and knowing your stories nonetheless. I don't exactly know where I'm at, but I think my story is okay to tell. I'm just so frustrated that my particular brand of screwing up my facial nerve seems so unusual, anyone know of resources for me? Name: KIM My pain first started in 1993. I was 25, mother of one. No one knew what was wrong. I went to several doctors and also to dentists. I ended up having a tooth pulled and a root canel in another. Of course, this didn't help. It took 2 years for them to figure out what was wrong. After several attempts to rid the pain with meds, we finally decided to have the surgery. The surgery was in 1996. (MVD) I've never had the pain on that side since. In 1999, I felt the same pain happening on the other side of my face. I tried to ignore the pain, thinking it wasn't really happening again. This time, it ended up to be 100 times more painful than the first time. I tried a few meds, then decided to have MVD done again. This time, the dr. couldn't find the blood vessel, he dicided to just nick the nerve. This took some of the pain away. The pain would still send me into tears. I was becoming very depressed and figured there was no hope for me to be pain free. In 2001 we decided to try the Gamma Knife, well, as luck would have it, it didn't help either. Now the doctors diagnose me with Atypical Face Pain. (hmmm, could this be because he damaged my nerve?) I'm currently taking oxycontin (60mg a day). This is some rotten med. I am seeing another Neurosurgeon and he has some new ideas. I feel there is actually a light at the end of the tunnel. The oxycontin is very addicting. I didn't think I would become addicted, well, I'm not, but my body is. If I miss taking it, I start to sweat and get the chills real bad. Hopefully this new surgery will work. It will be a while before it is done as the surgery is not FDA approved yet. Therefore my dr. has to get permission from the ins company to perform the surgery. Thanks for listening. Kim Name: Josie I have trigeminal neuralgia (8 years) last year I had the surgery vascular decompression, I was pain free for 6 months and then pain returned. Doctors are considering doing the same operation again. Has anyone had this done once or the second time. The doctor being referred is Peter Janetta in Pittsburgh, PA Has anyone heard of him or been to him. Please let me know. Name: anonymous I am looking for anyone around my age to talk to about this disease. I am 25, and it seems that the few people I know that have this, are at least in their mid 30s, 40s, or older. It is not that I do not want to talk to those people, but I want some opinions of people my age, especially since my doctor is telling me that the younger you are, the more likely surgical treatments will be effective. thanks Name: Donna Can anyone tell me if they have experienced the onset of neuralgia after root canals and apicoectomy? My endodontist never mentioned the risk of developing facial nerve pain and was dismissive when I kept going back to him with pain complaints. I am frustrated and really in pain. Tegretol makes me fuzzy. Can anyone comment on this?? Name: Joanne Did anyone ever try Botox. I know that it's used for more then one purpose..Did it help anybody with ATYP or TN Name: Sandie Name: Joanne at the age of 35 i started with facial pain and teeth..then it went through this cycle of doctors, dentist, neurologist and you nameit...then in 1997 i had in nyc a nurlog/sug for a mvd and i was in much pain and medications to no end..then in march of 1998 he did this procedure called rhiz glyo and it was horrible bees stinging all over my entire left side..then in april 1998 i lost my mom he blamed the stress...i was hospitalized for suicidal of my life of the painful numbness and the loss of my mom...since 1998 i been seeing phyo, good friends, family i had to leave a good job working over 20 years, broken up a relationship, church, keeping to myself. this disease destroys lifes..it did to mine.. this nov. 2003 i wen to a new nurlog which he is great in long island he did the gamma knife...but he did not do nothing to much to damage me more but i'm still the same..i went to see him i loss my dad in february 2003 and with the loss and coping i was climbing walls..i'm on kol, increased my paxill for depression and pain and i gained over 30lbs from depression and trying to eat i;m on kol. and trilip and persocts and valium i try to keep busy i been to church to pray for all the people who suffer from this disease i dont feel alone but i feel i was young to get this disawa and i still have a life to go and i have no ambitioun to do so..today with the humimidity its so paining i;m in bed all day..i bought a puppy to keep me from committing my life, i surfed and found this site and i'm been to support groups and I WISH EVEYBODY ON THIS SITE GOOD LUCK IN COPING AND WHAT HELPS THE MOST.. GOD BE WITH ALL OF YOU..By, the way i didnt mention accup thousands of dollars that my insurance didn't pay and alt. medicaiton....I can go on and on but it gets me more upset and nervous and now i'm going to see my chiro for neck, and shoulder pain and back..if anyone wants to email me please feel free to do so, of need any information i have tons of liture and a good doctor and been there and done that and i'll always be there for all of you......MY HEART AND PRAYERS GO OUT TO ALL..love joanne Name: "mamaslave" Hello out there. I am a 35 year old mother of two and started to feel extreme pain on the left side of my face almost two years ago. To make a long story shot, I was diagnosed with trigeminal neuralgia and tried the medication which completely put me out of reality, so I opted to have the decompression surgery. Since the surgery last September, I have complete hearing loss in my left ear, and vertigo as the arteries for balance and hearing on that side were damaged. I have consulted an attorney, but am very frustrated because we are not sure if this is a "reasonable risk" of the surgery. Oh ya, I still have the facial pain. And hearing loss was never discussed. The surgeon said that I was the ideal patient because of my age and health history. Now the doctors want to put me back on the medication, but I am very leary of it. I have undergone physical therapy and will be going to a balance clinic to help with the dizziness soon. I will also be having another surgical procedure to have a titanium screw anchored into my head to trasmit vibrations to my right ear. I guess I'm just frustrated and feeling alone as no one in my immediate circle seems to really understand what the pain is like when it strikes. I guess I'm just looking for some support or feedback or if anyone else has lost their hearing because of the surgery or if you have heard of anyone having these results. Name: Elizabeth I have an autoimmune disease called scleraderma. I was diagnosed about 9 years ago and until now have had a relatively minor case. I got a virus in July 2001 and afterwards the earache and sore throat kept coming back. After being treated with antibiotics and other sinus drugs the problem still remained. In January 2002, I got another virus that kept me in bed for 10 days. After that, the pain got worse including headache, eye aches, nose, face, jaw, teeth, etc. And it wouldn't go away. I went back to my family doctor and told him that I knew it wasn't a sinus problem and he told me I had glossopharyngeal neuralgia then referred me to a neurologist. The neurologist sent me for an MRI and MRA. He started me on 900 mg Neurontin. I also went to see my Rheumatologist. He decided that I'd developed vasculitis and a secondary medical condition caused by an auto-immune response to the viruses I'd had. My Rheumatologist put me on 60 mg of prednisone (a steroid) to stop the vasculitus if possible. He also requested I stop working. For about 6 weeks I laid in a dark room with no sound. Anything made the pain hurt beyond belief. Eventually I went up to 2700 mg of neurontin. It took the pain level down from 10 to about 5 or 6. I couldn't tolerate such a high dose. I was confused, couldn't remember things, dizzy, etc. I switched over to Tegretol. It was a little better because the cognitive side effects weren't as bad, but I still couldn't drive or work and I was still exhausted all the time. I got up to 1200 mg of Tegretol. At that point, the neurologist I was seeing gave up and sent me to a pain clinic and said I'd have to live with it. In October 2002 I referred myself to a neurosurgeon for microvascular decompression surgery. He assured me that 90% of the people who had the surgery came out of it without pain. I've always been "special" so of course I was one of the 10% that it didn't help. There was some relief, but it didn't last. I got down as low as 400 mg of Tegretol but the pain came back after 6 months. I went back up to 600 mg of Tegretol but couldn't go higher because I couldn't drive or work at a higher dose. I referred myself to another neurologist. She told me that I probably should have had an angiogram before having the MVD surgery. She changed me over to Trileptol. I started at 600 mg and now am at 1050 mg. I tried 1200 but it was just too much. I was very dizzy and nauseous. I'm taking 600 at bedtime and 450 during the day so I am alert enough to drive and work. The pain is tolerable (sometimes a little less than tolerable), but when I think about feeling like 24/7 for the next 20 or 40 years I just get tired. I can't stand a breeze on my face or especially in my ear as it makes the pain worse. The neurosurgeon has talked with me about going back in and cutting the glossopharyngeal nerve and part of the vegus nerve. I'm not sure what to do at this point. I've read that sometimes even that doesn't work and sometimes causes permanent tingling of the face, etc. Anyone else out there have the nerve(s) cut with or without success? Name: Sarah Having been diagnosed with occipital neuralgia, actually having a name to associate with this horrible pain has been somewhat of a relief. However, despite two rounds of nerve blocks to try and break the cycle, it seems as if my pain is something that I am going to have to live with for the rest of my life. I feel horrible because of the burden that this places upon the rest of my family when I am in pain. I am 29 and have two young children, and a wonderful husband who has supported me through this experience. This condition has been ongoing, even though intermittantly, for the past 3 1/2 years. I am glad to know that I am not the only person who has this pain! Name: Michael Jo I had Gamma Knife treatment on April 17th 2003 at Seoul National university Hospital in South Korea. But unfortunately TN recurred badly from last week.I'm now dissapointed deeply that I don't know what to do. I have been suffered this desease for 15 years. I did everything I could do such as taking tegretol,alcohol injection,operation on right lower mental to remove nurve. I'm suffering from too much pain on same portion that is right lower gum and teeth and lip again. Please anybody advise to me what should I do. I take 1 tablet of tegretol now .I'm afraid of side effect of this medicine if I take 3 tablets then feel dizzy and can't do anything right. I'm only 49 years old responsible for my family anyhow. I want some different drug with no such a side effect or any other treatment method. Looking forward to hearing good news from recovered person. regards, Michael Jo 17th June 2003. Name: Susan Name: "tikibear" i have had so much pain in my face manly the left side like feathers and worms fealings twiching and i pull my hair cause it hurts they say its stress but i think it came from a exposed neve in my tooth ther is no docter that can understand or help me this has been 2 years now.im on neurontin 300 mg someone must know what to do about this?? Name: Bev My story started when I had a toothache and went to the dentist, and ended up having 2 molars pulled on the upper left side of my mouth. I kept going back to the dentist complaining about the horrible pain, and the fact that my face was now drooping on the left side. The dentist said that I had neuralgia, and it was a medical condition and that I needed to go get medical help, and it was nothing he had done. I was fine when I walked into the office, and oh so not fine when I left! I didn't know where to go, I was in the worst pain in my life! First of all I am a very active person, I am 4 foot 10,[small] and I weigh around 105 lbs. and I am a waitress by trade, but I am also a 4-H horse show judge and an open horse show judge, and I raise Quarter horses and Throughbreds, and do all my own training and showing, and breeding . I ended up crying my eyes out to my trusted "gyno" who had just given me a hysterectomy a year before, and he was as supportive as he could be, although he thought I had Bells Paulsey because of the drooping, but he told me to go to a ears nose and throut specialist. I ended up in a hospital emergency room when I could no longer stand the pain, and they did a cat scan, and told me to go see a neurologist there at the hospital. They set up an a appt. and I went. the assistant did her thing and said she thought it was Bells palsey, and gave me the steroids to get started on. BUT no the pain got worse. I finished the steroids, and told her it got worse, so she said that she thought it was the a -non typical face pain. then she started me on the anti-seisure drugs. these drugs scared me, and I had heard of terrible side effects from them, and I was not willing to give up my life just yet. I of course do not have insurance, so this whole thing has just financially corrupted me. i was engaged to be married in Sept. 02, and this happened in january 02. I dont remember how I got through that year, but I knew I wasn't going to give up my wedding, even if it killed me. anyway, i somehow kept my job, my boss was very supportive of me, when i would call and say I couldn't make it in that day, I couldn't even talk, and thats a very important part of waitressing, or think, and it kept getting worse. the pain was just too much. Anyway, Since I had no insurance, I was not getting very far medically, and the anti-seisure meds worked like crazy, but I didn't want to stay in the zombie state for 6 months like the Dr. had wanted, so I quit taking them after 2 weeks. I got real bad, I was sliping off to a different world, and I knew I was not going to be aroung very long. AND there was nothing I could do!! I prayed, GOD where is my help??? One day, I got up and started walking aimlessly around, and I came across a lady watering her yard. we started to talk, and she immediatly asked me what was wrong, and asked if she could touch me!! YES I said, yes, no one touches me and I could use something! She was a message therapist, and she started working on me. she found my lymph node under my left jaw, huge. she worked and worked on me, 2 hours or so, and I felt a pop, and my eyes felt better! There had been so much pressure in my head and eyes, and my whites of my eyes had turned a yucky color, blood shot and yellow color. after the pop, I looked in the mirror and the whites had cleared up!!! no kidding a huge difference. She worked on me for several months, and I have gotten better each day i stayed alive! It is real hard to live this way. I am constantly in the outside[cold]weather and that is hard on my face. It takes so much energy to wake up, and want to open my eyes, and start my day, it is always a question, do I really want to live today? I am very depressed, because it is an ongoing thing with NO break, and going to work every day, is so hard. My left ear is very sensative, and my brain isnt working very well these days, and I am so NOT normal, I can ask myself WHY ME every day and get no answer, so now I ask, now that i have found the man of my dreams and he stuck through this with me, when I am sure he thought I was a little crazy,how do I get ME back?? and who am I these days?? not the same person anymore thats for sure, I cant enjoy anything, Is this going to get any better with time, it hurts just to wash my hair, to comb it is too much, to lay my head down after a horrible day at work, hurts so bad, the whole back side of my head alse hurts, every tooth on the upper leval hurt, and now, I had a tooth break in half the other day on the right side of my upper side!!!!!!!!!!! I am not going back to the dentist, but now the right side of my face is throbbing with pain and I cant eat.NOW what do I do??? I can not event think of someone touching my teeth, all the nerves are so sensative, Where do I go, I am very afraid, I wish I knew what to do next Name: Jerry I began experiencing pain in the classical configurationabout15 years ago. I had all kinds of problems getting a proper diagnosis. My teeth were acquillabrated (ground down to mesh better), I had alcohol and freon injections recommended and people suggested dietary change and surgery to sever the nerve. I rejected all these and finally got a diagnosis for the condition from a trusted friend, a neorologist. he told me it could possibly be treated by tegrotol but the symptoms sometimes return. I tried the tegrotol and it did help for a few short weeks. Then I started to break out and the terrific pain started to return. He also told me there was a radical surgical tretment which had had some success. I went to see a neorosurgeon who gave me the literature and discussed the pros and cons and gave me the name of the surgeon who had discovered the treatment, Peter Jenetta in Pittsburg. I switched to dilantin and soon the temporary relief was gone and I developed a reaction to dilantin as well. I decided I couldn't continue with my pain or4 the drugs and went to see Jenetta. He was matter of fact about the diagnosis, confirming it, and saying how they could solve it by boring a hole in head and digging down to the center of the brain and iwth microsurgery find the problem which is usually a nerve being beat up on a spasming vein. His casual treatment put me off for a while but within a year, I went back and listened harder. We set up the surgery and did it in September of 1991. I have been pain free ever since. I highly, enthusiatically, recommend this course for people who are not helped by or cannot live with the drugs. While it is expensive it will probably be the best money you will ever spend. And the expense is not as great as you might dread. Name: Christine I have been suffering fron ATN for 16 years and reading these stories it is good to know I am not on my own. I was begining to think it was all in my mind, but I thought it couldnt be this painful if it was all in my mind. If anyone would like to contact me to discuss this awfull pain please feel free to do so. Name: Cathy I had to leave work today, the pain was so bad. I have had TN for three years now. It went into "remission" for about a year - but it's back.I am taking tegretol, and I have had six months of acupuncture - which is not a very nice experience. The pain centres on my right side of my face, mainly the teeth and jaw area. The extreme pain comes in waves - and all I can do is cry until it eases. I am afraid to go to the dentist for a cleaning - because it triggers an attact. It gives me strength to face this terrible illness when I read of others. They are the only ones who understand how painful this is.Heaven help us. The neuralogist said that eventually I will have to undergo surgery to sever the nerve from the brain. I have not talked to anyone who has had this surgery, and it frightens me. I find that when I put an ice pack on my face during an attack - it helps numb the pain somewhat. Thanks for listening. Name: Steven I am an Electrical Engineer. I have a BS and an MS in Mechanical Engineering then I went on for a Ph.D. in Electrical Engineering. However, my first love was Psychology. When I went to school in my youth I had a reading disorder and a focussing disorder, but it wasn't my eye sight. However, I could not explain to anybody what the problem was. I would fall asleep or drift as soon as I would read. In my earlier days (teens) there was soreness and eye aches, but I ignored this. Somehow even though I graduated close to last in my class in high school I managed to make it into a junior college. Even though, I still did not know what was going on. All I knew was my thinking ability far exceeded my ability to perform in my academic achievements except for math (scored fair in math). Eventually, I made it into Temple University into the Psychology undergraduate program. I lasted for three years, but I couldn't keep the disorder from hiding and eventually I lost the battle. I did not graduate. That was my whole youth. I still did not understand my eye pain and head pain. I was in total denial of the physical problem. I sought help from a Psychologist. There was no help in this area unfortunately. Later, I started taking courses at night at Drexel University in Mechanical Engineering in continuing education and after proving myself I matriculated. I remember at the beginning having to read and reread the physics book because the pain in my left eye was increasing and causing me to drift. I forced my way through the material. I remember getting to the point where the pain was so sever that I would pound on my head because I wasn't paying attention when I was working on problems. Needless to say eventually I managed to make it through the undergraduate program. I started my masters degree, but by know the pain increase so sever that it felt like, "an ice pick" in my left eye and would last for days or weeks. At this point I finally went to a physician (1985). He put me on Nuronton which basically did not help and just made me feel sick. Since, the problem was primarily in my left eye he sent me to an opthamologist. The eye doctor also tried Neurontin even though it was tried he felt it was long enough. After a month of being sick with no relief he gave up and said it was not the eye. The pain also reduced on its own to a lessor amount anyway. One thing I noticed I could do was move my glasses and increase or decrease the pain. So I thought the pain was associated with my astigmatism. I never thought the frames of my glasses would be triggering the pain and latter on that is what I found to be true. Because the pain would increase and decrease on its own and I could control it with large amounts of Advil I didn't do much about it with the Medical community because of the previous experience until 1995. I had been studding for my Ph.D. qualifier and the pain in my eye escalated to a severe level. I could not even open my eye. I went to my primary who took one look at me and diagnosed it to be migraines. He sent me to a Neurologist. The Neurologist gave me inderal and Max-alt. I think the inderal help prevent the attacks, but I am not sure. I certainly had attacks four or five times a year even when I was on inderal. The Max-Alt did not help at all. I just over dosed on Advil. The Advil seemed to have the most benefit at this time. At this point in my life I started to struggle with my carrier and my education. I basically lost my chance for my Ph.D. and I proceeded to focus in several I my interest areas that included adaptive controls, imaging, neural networks, and diagnostics, but unfortunately, this is applied to robotics not medicine. I was doing fairly well. I won best paper, came close to patenting an algorithm for automatic test pattern generation, I was key to getting an robotic machine for the Navy funded, and an information management system that really could be cool. This was between 1995 and 2001. Unfortunately, as the problem persisted. The frequency of severe pain increased to the point where it just didn't go away. Not only that I deteriorated to the point where I cannot read. As soon as I read with paper or from a monitor I feel the pain increases like a knife is penetrating my eye. Moreover, at this time I had pain like a vise was squeezing my head and a baseball bat was hitting me in the back of the head. In 2000, I had an MRI and a Cat SCAN that revealed five herniated discs with congenital spinal stenosis in my neck and a very large cyst on my left sinus. After seeing specialists associated with ENT and Orthopedic Therapy they felt the primary problem was Trigeminal Neuralgia. I then proceeded to see a Neurosurgeon. I was put on Tegretol for three weeks on graduated dosages. The medication did not treat the symptom and it made me sick causing hypersensitivity, agitated behavior among other. The Neurosurgeon urgently pushed for an appointment to the Jefferson University Headache Clinic headed by Dr. Stephen Silberstein and Dr. Young. Prior to going to the headache center I returned to the ENT for a second opinion and the cyst was removed (2/2002) this removed 50% of the facial pain. Not the pain in my eye, but a significant contribution to pain in my face that needed to be removed. In addition, I returned to my Opthomolygist, because I had switch to contact lenses to avoid the lenses from pressing on my any trigger points. However, the contracts themselves were to difficult to deal with so I elected to have Lasic surgery to eliminate the need for glasses (4/2002). One thing I should make note of is that during the Lasic surgery a fixture is used to hold the eye from moving. A significant pressure is used to insert the fixture and when the part applied the pain increased significantly peaked and I saw a flash of light. Then the pain disappeared for several days. Unfortunately, it came back. I finally started with the headache center in August, 2002. Just before I was seen there I went to the Wills Eye Institute because I believed I had medal in my eye. The gave me a clean bill of health and told me the problem is not my eye. How many times have I checked my eye now. Sound like people and their dentists. The first visit to the headache center. I saw a doctor named, Audrey Halpern. After about an hour. She retrieved Dr. Silberstein and they claimed that I have this rare “disease” called, Hemi-cranial continua. It can only be corroborated by the treatment, which is indomethisin. I improved only slightly. They put me on Celebrex and I improved significantly. They increased the dosage and I improved until it became manageable. There are other aspects that have not been affected by the treatment with celebrex. So Dr. Halpern put me on Topamax and gradually increased the dosages. In November, 2002 I had spine surgery which took away the feeling of being hit in the back of the head with a baseball bat. In my most recent endeavor I had several Botox injections in the area around the affect sight. Not only did it not help, but it seemed to influence pain in and around the most recent areas that I have been operated on. The agitation lasted for six weeks. However, even with all of this I still cannot read. The pain is still there continuously in my eye and above my ear, but not the the severe level that it was. The headache center has gotten me into a place where I can call a plateau. It is now May28, 2003. I still have this ambition about my academic life, but my head and eye are still in the way. I am pursuing my own view of this whole thing, and I have a belief that the medical profession is not taking advantage of several other technologies. I have some questions: 1.Why are the doctors cutting blood vessels (e.g., MDV)? 2.Why are the doctors using Botox (i.e. poisoning the nerves, reducing reaction times)? 3.Why are the doctors using Tegretol In my opinion, there is a science that seems to be ignored called Neuroscience. Some part of modeling could be used to understand the problem, medication is definitely important, but I tried Tegretol and if this is the reaction the everyone that takes it has there has to be a better way. Topamax is much better. With Neuroscience a genuine approach to Behavior Modification could be considered with implanting (if necessary) monitoring signal detectors. Well that is it for now. I am out of breath. If I get a second wind well never mind. Steve Singer God Bless to all. Name: "Winifred" Please see comments above Name: Patricia Hello, MELKERSSON ROSSENTHAL sindrome has diagnosed me which many cases are not known, also I have the disease of CROHN, one of the consequences of sindrome of Melkersson is the trigeminal neuralgia aside from others consequences, I´m very interested in knowing other cases people who have this disease mainly if they also have the one of Crohn and to know to the treatments and the effectiveness that they have had. Thanks. (traducido por un amigo que desea lo mejor para ti t.q.) Name: LuLu Oh Boy! I have just discovered this web site today and having read some of the stories am feeling part of a global family which gives me some comfort. Just over 2 years ago I felt sharp stabbing pains in my outer ear when I touched it or rubbed it against a pillow or clothing. I wasn't too perturbed because I thought that I had just "slept on it". When the pain didn't go after a few days and it felt as though it had moved into the ear canal I decided to visit my general practitioner who checked me over and couldn't seem to find anything, no inflammation etc. She did a brief check for TMJ but as I was not showing any of the typical signs - clicking jaw and so on, she felt that that was not the problem. No treatment was given and I was told to just keep a watch on things. Over the next few months I noticed that the pain, not the sharp, shooting pains that are typical of TN, but rather a dull, pulling type pain started spreading across my cheek to my nose and then, frighteningly to my eye! I then went back to the GP who felt that there was some sort of trigeminal nerve involvement but, as the pain was mainly concentrated in my ear referred me to an ENT. He could not find anything wrong on investigation but thought that I should consult a neurologist. This I did and he thought that an MRI to rule out any tumours and so on should be carried out. This I had and they could find nothing wrong except a slight inflammation of the mastoid. The neurologist then sent me back to the ENT who said that this "so-called inflammation" wasn't anything to be concerned about and I had trigeminal neuralgia and prescribed Tegretol. Well, the Tegretol did nothing for the pain and just made me extremely tired, listless and "spaced out". I then believed that it was something that I just had to live with. At that stage I could because the pain was intermittent and was bearable. Over the past 18 months however the pain has been getting worse and worse and is now almost constant, although I have not reached the stage where I cannot sleep. I have now started looking up TN on the web and I do not believe that I am suffering from classic TN. I feel as though my ear is constantly filled with something and have to keep trying to "pop" it although that doesn't work, my nose and cheek are constantly tingling (along with my ear) and my eye is aching all the time. My scalp on that side of my face has begun tingling and my neck is also aching - but I am sure that that is because I tend to favour the right side of my face. Every time I go back to my GP I am just given Tegretol which I take for a few days and then, because I cannot function properly, I give up in disgust. I also suffer from depression and anxiety (who wouldn't with this constant pain) and have been taking Aropax for this which appears to help the depressive symptoms but has had no effect on the pain at all. I am worried that I have some sort of tumour that the medical people are not diagnosing or something equally life threatening and am now ready to throw myself off a cliff. I have not been able to share this with my family as my husband is extremely unsympathetic and my two teenage children just go into a flat spin when they think that there is something wrong with my health, so I have felt awfully alone until now. I have decided that I am going to see the dentist to rule out or confirm TMJ and will then take things from there. All I need right now is just to have a proper diagnosis and I will then take things from there. Thanks to all of you who have taken the time to write your stories and to those that have offered hope for this affliction. God bless you all! Name: claire Hello Ron, I saw you on the internet with dental/nerve problems much like my own. I was seated for a crown on my #14 tooth on Feb.14, 2000. The pain began and I was provided with pain killers and told it would be fine. About 9mos. later I was talked into a root canal. Still the pain remained but did get worse. Again, I was told to be quiet about it and keep talking the narcotics. I was back and forth to this dentist for another several months. I tried many times to tell him that I felt like it was nerve damage because of the =burning, buzzing, pulling, tearing feelings in my mouth, jaw and pretty much the entire side of my head. "You don't have any nerves in there, I took them all out." I finally agreed to have the tooth removed after going through another expensive of a root canal which he told me" if it doesn't work you won't have to pay for it". (He billed me for the root canal as well as the extraction.) The last time I was in the man's chair he and his assistant opened my mouth, slapped on a rubber dam and proceeded to do an unauthorized, unexpected and unnecessary root canal on the tooth #15. (Talk about shocked!) He even vocalized in front of others, "I won't send you to the oral surgeon." After doing the root canal he sat me up and said, "Well, that will have to be finished off sometime." And he was right, it was hurting terribly and his office manager said, "well, you'd better get on over to the endodontist." (This cost me $902 and did not help anything.) I finally managed an appointment with an Ear Nose and Throat doctor, as I wondered if there wasn't a strange infection going on that was causing this. We did a cat scan and found nothing out of the ordinary. Finally, to the neurologist I went. I was put on Neurontin for nerve damage, without any success. My husband and I made an appointment at the University of Washington pain clinic. There I was diagnoised with atypical facial neuralgia. Different drugs and to have an MRI was what I was prescribed. Unfortunately, I had a rather large and dangerous anurisym which was not connected to the pain. We did manage that by having a very lucky and successful coiling done at Oregon Health and Science University in Portland. We went back to OHSU to the "facial pain clinic", where we saw yet another neurosurgeon. They diagnoised me with Trigeminal Neuralgia, in connection to the dental proceedures. They only could offer me the option of placing electrodes in my jaw area or directly on the brain, running wires down under the skin to a box in my chest which shoots electricity to the damaged site and it is supposed to fool the brain into not feeling the pain. I have retained an attorney who is having trouble finding an expert witness, as it's true: they stick together. The whole mess is ruining my marriage, my business and my life. I have recently learned that this dentist has just returned from drug rehab. Apparently he has been shooting up narcotics for years. He has been allowed to be back in business and of course is denying any misconduct. We have used up our entire savings, flelx plan and insurance we had. Everything revolves around my face pain, daily. So anyway, if anyone has any suggestions please help, I'm afraid the attorney sees that these cases are very hard to prove but I am living proof that dental nerve damage is a very real and dangerous problem. I have lost my life to it. Thanks for listening. Claire Name: Gina I am newly diagnosed 44 yr old woman suffering with this unbearable disease and trying to raise two ADHD teens without losing my mind. I take carbamazapine and cannot keep awake but regular pain killers do nothing. Will I have this forever if I refuse surgery? I also have many migrains , anywhere from 6-12 a month. Is there anyone out there that experiences this shock like pain in the neck and down into the upper part of the chest? Until I was diagnosed with TN, I was sent to the dentist who said that I grind my teeth because I have stress. Good Grief, who doesn't have stress. This excruciating pain felt as if someone were stabbing a knife into my face and then I had electrical like shocks. My teeth felt like they were being extracted without drugs and my toughe was being ripped out of my mouth. DOES ANYONE EVER FEEL LIKE THAT? couturedetail@yahoo.com Name: Katy First it was on the right side of my head, because I had a few months earlier had dental treatment I thought it was toothache, so did my dentist, following much unnecessary dental work including fillings removed, and drilling into a live nerve which she insisted was dead, 9 injections later, so much pain. I then change dentists, incidently filing a law suit against my previous dentist. This one thinks the problem is because my lower jaw is set further back than my top, so is causing my jaw muscle to spasm, gives me a Lucia Jig to wear over my two front teeth to prevent the muscles from clenching. Slight relief possibly from this for a couple of weeks. Then the pain returns on the left side (this was about 9 days ago), Oh the pain, sheer aginy, no sleep hardly for a whole week, whole nights literally screaming in agony. Went for Cranio Sacral therapy, this made my head feel ilke it was going to explode, such a bad headache. The thearapist told me to come back the next day, which I did, resulting in more agony, the following two days I saw a chiropractor, who said he had never seem a skull so tight, he has helped relieve it for now... Thank you so much for this website, I'm just back to work today, and it helps to know I am not alone. No one can understand the sheer agony, isn't it awful??!! God bless those who suffer! Name: Dennis Sudden onset in December 2002. Episodic (daily) acute pain. After clearance from dentist, diagnosed as TN by GP in March. Prescribed Tegretol without any warning about it's use and no plan to monitor it's effects. After reading of how it worked and possible 'side effects,' returned it to pharmacist unopened. Began using Zostrix 4x daily. Partial relief within days, increasing to total relief in 4 weeks. Asymptomatic since Name: Steve In August 1996 I went for a routine filling in my right incisor. When I got home after the block anaesthetic wore off I was in severe pain. I ran around my flat with a towel over the face, screaming. I thought the pain was temporary, here I am 7 years on and even though I have had numerous diagnoses and treatments I am still battling this pain on a daily basis. Some days I feel desperate and feel like giving up and leaving this life, only other people who are suffering this pain can understand. I don't know where else to turn. I've had Gamma Knife, gave 5 months pain relief-drug free, had Glycerol Injection, took the pain away for 6 months-drug free. Now I've seen so many Neurologists, GPs and specialists that there is no one else to see. I've now got a referral to a top neurologist Dr Zazkrewska in Barts London but I don't know what else they are going to be able to suggest. I'm currently taking 6-7 100mgs of Neurontin a day and it helps a little bit. The worst time for pain is when there is friction on my gum r/hand side, especially cleaning teeth, eating,talking, shaving, changes of tempreture-washing etc etc. For 7 years I have had to prepare myself, pysch myself up ready to eat. I realise that other people without this pain just eat, they don't have to worry about it. The pain wakes me up during the night sometimes and I find that the side effect of drowziness from Neurontin helps me sleep! My doctor hasn't suggested any liver or blood tests and I've been on Neurontin now for 7 months? I really don't know what to do, I'm 37 and it feels like my life is wrecked. When I went for Glycerol Injection I had been prepped for MVD but on the detailed MRI Scan they couldn't see any blood vessel overlying the nerve. I would be very interested to communicate via e-mail with anyone else with similar experiences of facial pain or any info. My pain is burning-like red hot poker, tingling, shooting, hot/cold, twitching, tic. I think my Trig Nerve may have been damaged by Dentist Anaesthetic Injection? Thanks. Name: Allison I wrote in last fall that I had just been diagnosed with TN and a bunch of jaw problems. I am happy to say everything has improved since then! The TN diagnosis turned out to be a miscommunication and instead it was changed to severe acute arthritis of the left TM joint. I was very surprised by this because I recently discovered my grandmother had had TN, and sometimes it is hereditary. Basically I don't have a left jaw joint anymore because it has completely disappeared. It was putting loads of stress and pressure on the right joint and was causing horrible awful pain. A headache all over the right side of my head, worse than any migraine, would build up all day and by the time I got done with class at night I could not drive myself home. It was horrible. The left side never hurt because the nerves there shut themselves down a long time ago. My doctor started me on splint therapy and it has been wonderful! I had relief almost immediately, which the doctor said means the joint was not actively degenerating. I have only had one or two headaches and a bit of popping in 6 months. I have to wear the splint all the time but I don't care, at least I don't hurt anymore. I'll likely have to wear it at least at night for the rest of my life, but that is a pretty easy solution compared to what so many other people are going through. He put me on Vioxx and a mild anti-depressant, but I'm off both of them. I didn't even have to do the physical therapy we had planned on. I did have to have a cortisone shot directly into the tendons along the inside of the jaw joints, which was very painful but made a big difference. It got rid of the last bit of pain that had been hanging on. My doctor explained that tendons have memories, and when they are stressed and always being overworked, they stay that way even when they don't need to be. The cortisone shot breaks that cycle and lets them relax. Maybe that will help someone. Life has improved so much. I still don't have a jawbone, nothing short of condyle replacement surgery will fix that, but it doesn't really matter anymore. I have no more pain and no more worries. To everyone else out there - hang on, and I wish you all the best of luck. Name: Diana My mother has trigeminal neuralga and she had the gamma knife a year ago. 2 months after the surgery the pain subsided and everything seemed fine. Suddenly, a year after the surgery, her face went numb. Next week she is going to have her dentures permanently fixed in because they keep floating out of her mouth. She has no feeling for half of her face and tongue. She has to be careful not to slobber. Her mouth now looks distorted, like a person who has had a stroke. She has to eat baby food. We will be going to a speech therapist next week also because she can barely talk. The worst part of this whole thing is that she had another gamma knife procedure on the other side of the face recently, before the numbness set in. Now we are afraid her entire face will be numb in a year. Name: Lena This all started in 1991. I started having the classic stabbing pain in the right side of my face. If you have TN you know how this feels. My dentist diagnosed me but I had to go to the neurologist for a MRI. I was put on Tegretol for the next 11 years. I had pain about every 3 to six months, but then all of a sudden the worst happen, the tegretol stop working. I started out at 200mg, then 400mg, 600mg, 800mg,1200mg,1400mg. I started having double vision and dizziness, and the pain was still there stronger than ever. Then I was put on Carbatrol 300mg 4 times a day, the pain was still there. I was going to the Neurologist every 10 days. I had no sleep, then the sleeping pills, when I did sleep I had nightmares. Also the strong pain pills..nothing. I had the pain over and over. I could not brush my teeth or feel the wind on my face. I was the only one I think who did not lose weight. I could not eat anything crunchy like vegtables, so I had to eat peanut butter and or soft Icecream, I could not stand the cold. After the Carbatrol did not work I was then put on Neurontin and Baclofen. I am currently on 4000mg of Neurontin and 80mg of Baclofen. The pain is now a burning numbing pain if that makes any kind of sense. I am also on Ultracet every 4 hours for pain. Needless to say my thought process is very limited. I am now waiting on my disabilty outcome from the advise of both of my Neuro. and my P.C.P. I hope it is approved. My last visit to my Neuro was 5/2/03. I have stayed on my medication plus a new on Trileptal. I don't go back until 6/13/03. If I am still having any kind of discomfort I will be refured to a surgeon.I want you all to know I have always been a very positive person a great outlook on life. However, since Feburary having this pain 24/7 If it was not for the love of my family I would have taken all of my medicaion at one time, only because I don't have a gun. I will never take the little things for granted every again. Maybe that is the reason this has happened. I will love to have the wind on my face. To laugh out loud, as loud as I can. To eat raw food. To brush my teeth as long as I want. To wash my face without dread or pain pills before and after. To be able to be kissed on my face without pulling back. To be able to sleep on my right side without waking up in so much pain I can't go back to sleep no matter how much medication I have taken. I am now 43 years old, and If this pain ever ends, and I know it will someday-somehow, I will be reborn. Godbless all of us who has had this upon us. Someone told me that I will be greatly rewarded after been through this Hell. Name: john i was for 7 years a fireman in bronx new york city . i had all sorts of injuries. i am thinking of going to the syracuse methodone program, mainly to control pain and or suffering . what does anyone think . Name: anna I was diagnosed with TN oct 2001. First 700 mg of Tegretol did the trick, now I take 1400 mg Tegretol, 60 mg Baklofen, 100 mg Lamictal. I just spent 3 days in the hospital. The doctor decided to to the MRI + spinal tap again. I hope, pray, for being a good candidate for MVD-surgery. I am not afraid of either side-effects of medications (which I do have) or brain surgery anymore cause the way I see it the alternative is suicide. I am rather depressed. I feel my life is destroyed thanks to this terrible disease. I also feel very lonely - the family doesn´t understand what I am going through. If anyone wants to be a friend just for mutual support, please e-mail me. Thanks Anna Name: Joe Hi, I will skip all the boring details. I have had TN for three years. The side of my face always hurts. I have not had the terrible electrical shocking pain break through in a year and half. I don't have any trigger points it just comes. Can anyone guess if I have atypical TN and facial pain or one or the other. I have only talked to one othe person(on the internet) that has it. Thanks Name: Emily I am a young 28 years old, but feel as if I have lived a lifetime of one four times my age. Before I delve into my TN experience, please allow me to share just a brief history of my past. The first 28 years of my life were marred by severe emotional pain and trauma. I experienced horrible childhood sexual abuse and as a result struggled with severe depression, anorexia, self-injury and Borderline Personality Disorder. The result of my anorexia caused devestation to my heart, and I was placed in the cardiac unit several times near death. Fortunately, I am now in recovery from my anorexia and my heart is healing!!! My depression, self-injury and Borderline Personality Disorder are also under control, thanks to medication, my devoted psychologist and psychiatrist and most importantly, the love and devotion of God to me, His child. As seems to be my plight, however, just when my emotional(and resulting pyhsical) disorders are under control and I am healing from my childhood wounds, I have been diagnosed with vocal cord dysfunction and trigeminal neuralgia. I quite recently went to the dentist because of the severe pain in five specific teeth (Thankfully, I've had no facial pain, only SEVERE tooth pain, though occuring in both sides of my mouth). After dental x-rays revealed no cavities or decay, my dentist sent me on to an oral surgeon who diagnosed TMJ. While in the process of making the typical TMJ splint, my teeth pain GREATLY intinsified. Going back to the dentist, certain he must had missed the cavities as specific teeth pain is not associated with TMJ, he said I must have TN and referred me to a medical doctor. My primary care physician concurred with the TN diagnosis and placed me on Oxycontin and Tegretol. He wants me to see a craniofacial surgeon, but the only one an hour away from my residency (Dallas) is not on my insurance. Because of my heart condition (I've been hospitalized four times and in the ER three times in just the past year) I am in severe medical debt (I am a teacher and single, which means I have very little income). I must describe my pain as ABSOLUTELY EXCRUCIATING. I cannot brush my teeth or eat, which is significant since I am in recovery from an eating disorder. I have yet to find a specialist who is on my insurance plan (Blue Cross/Blue Shield) or even in the Dallas area. The pain is so severe I feel as if my nerves are dangling in my mouth and professional boxers are batting at them as if they were their opponents in a heavyweight championship tournement. Thus far, the Oxycontin brings little relief, and I have only begun my Tegretol treatment. I have been placed on Tegretol in the past, but used as a mood stabilizer, as my TN pain has just begun recently. Currently, I am on Zonegran, another mood stabilizer/anti-convulsant as well. My doctor, psychiatrist and pharmacist are worried about the effects of two anti-convulsants in my system. I just pray that the Tegretol will work for my TN and the Zonegran will continue to work for my moods without much interaction. I pray that despite this intense pain, I will be able to finish the school year as the devoted teacher that my children deserve. Being a former self-injurer, I have a high threshold for pain, so pain never really bothered me all that much. Never in my life have I experienced this kind of pain. Seeing stars is not just for cartoon characters. The ironic thing is, my heart damage, which was in essence my fault, is healing. My vocal cord dysfunction and TN, which are not caused by my doing are creeping up to destroy my life when all the pieces were just falling together. I also think it's quite odd that this TN came on quite suddenly, as in a matter of weeks. Is this typical with TN? Though my dentist and doctor both concur with the TN diagnosis, I lack the resources and funds to seek further treatment from a TN specialist. As stated, I'm not even sure there a specialist in my area who is on my insurance plan. Is there ever any hope? I have learned, that throughout my ordeals and trials, my final hope rests in Christ Jesus, who gives me eternal hope. He took my sins on the cross so that if I believe in Him I will live forever in His side in Heaven and avoid eternal damnation in Hell. For this lifetime, however, I would like just a moment of relief from the pain, whether emotional or physical. Thank you for listening to my story, and forgive the lengthiness. Name:"gagasa" For many years now I have been suffering from these neuralgic conditions I am sure that when I had an operation for my parathyroids the surgeon damaged the nerves in that area I an in constant pain and I would like to hear from fellow sufferers if they have something to lessen the pain My quality of life has been badly affected and causes me to be depressed Name: Paul Hi Name: Rosie Hello,My name is Rosie, and my story started in October /2000. One night before supper, I started having a pain in my lower back teeth bottom right side, and a pin pricking feeling in jaw area. I swore this felt like I needed a root canal. I went to the emergency dental clinic he took x-rays, and couldn't find anything to justify the pain. He just said that there was a little decay on 1 tooth, to go and see my family dentist. The next day I did so, He fixed the tooth that needed filling, but I was still in pain with the back teeth. I went back anf forth to the dentist, he changed all the amalgam fillings on the lower right side of my face. He checked for a cracked tooth, he sent me for a special x-ray, there were no tumors. He started to do a puplectomy, and referred me to an Endodontist, the Endodontist couldn't find anything dental related. So they thought maybe TMJ disorder. I wore a mouth guard at night for 1 month,at times I do clench my teeth, but with no relief of this pain. I am wearing a TMJ appliance constantly now, with no relief in pain. The dentist's say its not dental related. After about 2 weeks in the beginning, my face started aching along the cheekbone, I started have ear pain, feeling of fluid in my ear, a burning feeling in the jaw area and bad headaches. I have seen to date 4 Ear, Nose and Throat specialists, and they keep saying because my hearing is good, and they do not see any fluid in my ear that I am describing, that it is nit my ears. I have had 4 hearing tests, a ct scan of the TMJ, an ultra sound of the jaw area where the nodes are, at first I said that at times those nodes under the jaw area just ached, and on the ultra sound they thought that it could either be a mass or another node ajacent to it. When I had the ct scan it ruled out any masses. I have had a MRI of the brain. With no findings. I have see, 3 neurologists , 1 referrred me to a psychiatrist, because at that time I lost my mother to an illness. So they thought stresses related to that. The psychiatrist diagnosed me as having ATYPICAL FACIAL PAIN. The other neurologist was at a pain management clinic, and he was interested in treating the headaches. This last one says he agrees with the others its a combination of migraines and neuralgia. I have been on imitrex for migraines, and their very costly at $20.00 a pill. But cost is a far cry if I could be pain free. Any ways these pills I have tried have not taken my pain totally away. My symtoms are still the same, some days are better than others, I get headaches, facial pain,at times it feels like something is pinching a nerve, also right behind the jaw feeling of pressure as if something is blocked. If there is anyone who has the symptoms of the feeling of fluid mostly in the right ear that comes and goes and sometimes the left can e-mail me so I know i am not going crazy. I alo now get a burning sensation more so now than before, down the sides of my jaw at times it just feels like an infection is there. I would be more than happy to read and learn what I can, because going to these doctors, yes they have been thorough, but now its like it must be in my head because they can't find anything. I know what I am feeling, and the medication doesn't help. I have been to a chiropractor / naturopathic / accupuncture nothing helps. So when does all this pain go away, anyone been diagnosed with this know to tell of when this pain leaves? Sorry about venting, but had to get this off my chest, been living in agony for almost 3 years now. Have had the course of blood work done also. Please advise! Name: Maria Well, this is not my story, but, I am in there, because my husband is the one who is suffering for the past 3 years, with this terrible pains in his cheek. For the past 3 weeks, it is been terrible, the pain is constantly, and he can not sleep, eat, talk or live any normal life. I was reading in this web, about the surgery that can be performed. His neurologist mentioned also to him, buy he wants to see a MRI first. Can someone please give an advise about what to do? I really don't know what to do. Thanks, Maria Name: Jill I have submitted my ongoing story twice before and thought I should update my account since my diagnosis has been changed. I traveled to Pittsburgh University Hospital to meet with Dr. Amin Kassam on April 1st for a consultation regarding what I thought had been established already: a diagnosis of both trigeminal neuralgia and hemifacial spasm disorder. He reviewed my records, MRI screens, and operative notes and told me that I didn't have hemifacial spasm disorder, that the muscle spasms I've been having are the result of nerve damage from jaw surgery I underwent in 1999. Furthermore, I was no longer at the "classic" trigeminal neuralgia stage and was now at the atypical stage. (One very clear indicator of this is that I no longer have trigger points for nerve spasms; they happen on their own at random now.) He was very sorry that he couldn't help me with any further surgical treatment (I'd been hoping for a repeat MVD to try and address a compression point again) and advised me to find a local neurologist who specializes in facial motor disorders. I cried off and on during the seven-hour drive back to Rochester. The good news is that Trileptal still protects me from nerve pain, if I stay between 600-900 mg. a day. Without it, the nerve pain is back and is unbearable at this point. It's very clear to me now that my life is forever altered by this and that I need to work hard at finding how to live with things as they are. I now have chronic fatigue syndrome, too, brought on by two years of the TN pain, and working is out of the question now. I'm taking baby steps in getting myself back on my feet, allowing my reactions/emotions to have their space. I also note the great blessings in my life, of which I have many, to help keep a sense of balance. Just thought I would pass this along. Thanks for "listening." Name: Mary Wynne Hi I have had TN for ever it seems. I just had Botox shots today and they seem to be working. I had pain when I stated the shots but when the Dr. finished there was no pain. Has anyone else had the shots out there? I hope to get at least 3 months the Dr. said. As anyone can tell you 3 months pain free can be a God send. I will write later to let you know how the shots are working. I tried all the drugs you can think of for TN but none really worked or the drugs made you feel so bad. My prayers are with anyone who has this problem. Name: "Caz2002" I got this 1st a year ago. Last attack was August 2002. Just started again yesterday worse than ever, went to doctor who gave me these. Make no difference. The pain is unbearable and constant now for 48 hours. It is to do with the teeth I am sure, as I only started getting it when I had root canal work last year. I need help on the best treatment so i can stop the pain. It is as bad as a knife in the face and jaw. Name: Bill I was a victom of a horrific crime. I was traveling down the expressway with my wife after treating my grandmother to her 75th birthday. We were minding my own business and loving life then within one split second our lives changed forever. These kids decided to throw a 32 pound slab of concrete off an overpass. It went through the windsheild and smacked me in the right side of my face. I have had face and nerve pain now for 9 years. I have not been the greatest person to live with but I finally realized I need help. I have tried pain meds and they made me extremely angry. I tried alcohol and that just makes it worse. If you are in pain and drink then that is a cocktail for disaster. I thank God everyday for my wife for she is my voice of reason. She has stood by me through thick and thin. And believe me when i tell you more thick moments that thin. I have constant pain I have a titanium cheek and a teflon eye socket. I feel for all that have the pain. I am going to the doctor today as a matter of fact because I know that now there has got to be something I can do to relieve some of it. I am a very bitter person for what has happen to me but now I hope that knowing that I finally said "I am bitter" will help relieve the pain. I hope that someday just because we had great surgeons or even if we don't have scars and look totally normal that down deep I know what all of you are going through. I haven't had a good night sleep in 9 years I have constant pain. I have two great kids that are missing out on a great dad somedays cause I am trying to deal with the pain. If anyone wants to just chat email me and I hopefully can walk with you in this painful journey. Name: Kelly i am writing on behalf of my mother who has suffered with occipital neuralgia for 2 1/2 years. she has tried all painkillers described and also had one injection of anesthetic and one steroid injection but still suffers with constant pain in the back of her neck. she is due to have a nerve block 21/04/03 ad we are praying this will work. is there anyone who is in similar situation and can give advice as my mother is in so much pain she is close to committing suicide. Name: Joyce i've had tn since last august i've read about different surgery's endoscopic keyhole mainly and Cedars Sinai in Los Angeles, Ca anyone know of this procedure, hospital, dr's etc. I can't keep taking all these pills nor the pain if I don't Name: rita Hi, I've had TN for 10 years. 7 major episodes. Attacks lasting 3 days each. Not knowing what I had, Ibuprofen was only thing I used. Now 3 years later I have atypical facial pain. Have been on amitriptyline for a week. It seems the longer I'm on it the more pain I,m having. I seem to do fine during the day, but wake with pain during sleep. I've been told that acupuncture works. Does any one have any answers to this. Name: NDempsey Finally! An ENT has put a name to my pain. Glossopharyngeal Neuralgia. Although after intense research I've decided it is not limited to just that. The vagus nerve must be involved due to the vibrations I have felt down my spine to the point of making me nauseated. Have also had the sudden spells of tremendous weakness and feelings of passing out. I have spent 11 years crying to the primary care dr. and he just kept saying it was anxiety and depression and that these things could cause my pain. I beleive it was the other way around. I've had a history of TMJ (so we thought) and then he said TN and I tried Tegretol and the severe pain subsided for awhile, yet the dull ache in my ear persisted, some days worse than others. I had a hard time on tegretol trying to stay active and work and chase 4 kids. Could not afford to be on the couch all day. The bouts always seem to follow a round with a cold bug in the winter. I had viral meningitis about 12 years back that really put me out of commission for awhile. I've had these weird unexplained pains on and off during winter and early spring. It always subsided by summer. I say it is new virus infections that must trigger old viruses. I know this to be a fact because I went back to college a few years ago and have been studying biotechnology and molecular medicine. Old viruses whether they are the latent kind like varicella zoster/shingles (chicken pox virus) or not, there are still little genetic reminants floating around in our cells that when a new virus comes along and there is a similar genetic segment, can match up with the old virus and cause an inflammatory response. Sometimes more severe than the original to begin with. This is just my theory on my own situation. I have not found anything in the literature to this effect, except for Bell's palsy and Ramsey Hunt syndrome, but both of these primary symptoms are paralysis, and I have had none of that. So much is being learned so fast in the molecular medicine world it is hard to keep up with all the new findings. So I expect someday soon we will hear more about this possibility. Of course as rare as TN, GN is even rarer, so nobody is really doing any clinical research on it. At least none I've found yet. I don't know what the future holds for me or any of us that suffer, but I guess we just have to take it as it comes and thank God for the pain free moments when we have them. I am 1 month on Neurontin and increasing dosage each week as necessary. Not totally pain free, but at least I'm not freaking out with the anxiety as bad as I was. Name: "pain" facial pain and a twitching inside the tooth this happened after a root canal. Name: "jj" All my troubles began so long ago that I cannot quite remember. I never heard about TN so I had no idea what was going on. I used to wake up with my left ear and part of face on the left side burning and with strong stabing pain. I blamed the bad pillow, so I bought new one. These episodes repeated once in couple months and then began more often, weekly and then daily. What was worse I learned how to live with it and being in pain. At the end I talked to a friend. She recognized it imediately. I went to a doctor. Got carbatrol 200 and next month 400mg daily. At first I was so happy I had no pain that I did not care of any side effects. Did not feel disy or sleepy. I've been on it 5 months. But last month or so I began to feel very week and loosing my energy for school. I am a graduate student having trouble with exams because of carbamazepine. I noticed I cannot memorize anything and "feel sure". I constantly feel "empty headed" I also notice that I have blank spots about things, people and places. I cannot live with these gaps and finish school. I felt also depressed. For a week or so I blamed PMS. I decided to investigate my self. I took my self (bad idea!) of the medicine for about 2 weeks. Did not have any pain but the readings began easier and I felt with more energy. I CANNOT STUDY IN PAIN BUT ALSO THE MEDICINE IS AFECTING MY LEARNING. I feel I am in douple japardy. If anyone has any advice, let me know. I do plan to call my doctor tomorrow. Name: Jamie I still have constant burning, pulling, wrenching, broken bone, rotten tooth feel on the right side of my face. Elavil has reduced the pain to the moderate level. I go back to my doctor Monday to re-evaluate the meds. I can't believe how untreatable this is!! It is so frustrating to be in constant pain. I find myself laughing or scoffing at other people who complain about their sore knee or upset stomache. I know I shouldn't, but if they only knew how painful nerve pain can be. I would trade an upset stomache for this pain ANY DAY! I want to thank those who wrote me. We need to keep in contact, especially since there are few Atypical Support Forums out there. I would love to here from you!! Name: delica hello. i too am living the nightmare existance of atypical trigeminal neuralgia, or atypical facial pain. i'm not sure if there is any difference in these two diagosis. my symptoms started with a simple genioplasty(chin reduction)from a very reputable plastic surgery(top 100 in the country). post op 5 days i began experiecing 24/7 pain. it was constant, with aching and burning and piercing, stabbing, lightning flashes in the area of my chin. i complained continuously to the surgeon. when i awoke from the surgery i also had 5 lose teeth(3 incisiors and the 2 canines). the canines tightened, but i ultimately lost the 3 incisors and now am in the process of having implants. the plastic surgeon attempted to convince me that i had peridontal disease, but i knew i didn't. i have never had peridontal disease or any teeth problems and had just had a cleaning and xrays two weeks prior to surgery. he finally removed the plate in my chin, after i had seen another 13 "specialist" trying to get out of this horrible pain. after removing the plate, my face shifted, and he discovered that i had also incurred a fractured during the procedure. this wonderful doctor had caused this horrible condition (ATN), broke my mandible and destroyed three teeth. i am now in the process of having teeth implants placed. the pain is intolable at times. i can't determine all the triggering factors. cool air, cool foods, touch of the area, are a given to set off the spasms of piercing pain. at times it is as if your entire body becomes enveloped in the pain. i saw a neurologist today and he began me on trilrptal in addition to the neurontin i'm taking. the neurontin is causing side effects of ataxia, memory impairment, sleepiness, constipation, and just a slowing of all my bodily functions. i simply hate this. it seems to control the piercing pains, but doesn't eliminate them. the other pain, such as the continuous aching of the chin area and burning sensation never subsides. he says it is too soon to consider any type of surgical procedure and after reading the other entries, i'm reluctant to even consider a surgical treatment. i told the neurologist thst i have something that doesn't kill you, instead it stills the joy of living. i can't imagine living this life. this has been going on for almost two years, and i'm ashamed to say i'm no longer the same individual. i dread every meal, since eating seems to be a trigger at times, sleeping seems to happen every three days from shear exhaustion, and then it is interrupted any time i accidentally allow my face to touch a pillow. i work as a registered nurse in the recovery roon and it has interrupted my work. i'm only working 6 hours a day due to the pain and sleep depreviation. narcotics doesn't help and i don't want to feel that "drugged" feeling and still experience the piercing pains. i'm at my wits end with how to deal with this and have some sort of quality of life. i'm considering accupuncture and wonder if any one else had any success with this. thank you for your time and response. sincere, delica Name: Barbara T I am an R.N. and on the way home from work in 1987 I felt a quick electricl shock go thru my Rt. side of my face and it was gone. I immediately had the insight that I have Trigeminial neuralgia. It progresses rapidly and after 13 mo. I was so loaded on medication and felt suicidal that I decided to see Dr. Robert Campbell at IU Medical center and had brain surgery 1 month later. He helped perfect the procedure so the 5th cranial nerve would be preserved so there wouldn't be paralysis. The brain surgery was no picnic. It went great but the pain was more than I thought I could bear. I couldn't feed myself for a few days. I became confused and left the unit and they found me several floors away. I was restrained and never regonized my family and have no memory of this. Previous to loosing my memory I remember hearing and seeing people who weren't there. I destroyed a room. Yet, I couldn't walk. On the 7th day I woke up felt fine and was released. I have been 100% pain free ever since. I believe my Doc is retired now but I don't know. I would do it all again to have the pain gone. Name: TH My husband had extensive dental work in Oct. and Nov. 2002. In Nov. 2002 the stabbing pain started in his lower right jaw. Assuming that it was the dental work, he went to his dentist repeatedly, to a endodontist, and then finally to a neurologist. The neuro put him on tegetrol which did not help. The pain was daily and stops him in his tracks and he cannot function with it. He had about 10 consecutive days and thought it was over. WRONG! It has started back and he saw the neuro again today. He has started him on Trileptal 300 mg per day along with Darvocet. He is scheduled for a MRI on Tuesday next week. We are confused, because others say that you cannot touch their face, while he gets a little relief from chewing gum or brushing his teeth. If anyone has any advice or knows anything to help, please email me and let me know. Thank you. Name: lily Name: Carol I had never heard of this. I woke up one morning and began having these severe shock like pains down the left side of my face. I first went to my regular GP and he prescribed the Neurontin with no comment as to what he was treating. For the first few days it seemed that this was going to stop it but again it started and on my return to him he sent me to a neurologist. I think he knew from the beginning what was occuring but did not go into in details. He presecribed the Topomax and Indocin. However, after a month there was no let up of the pain. At this time I had a followup appointment with a Pain Management Doctor(due to broken back and subsequent back surgery). I told him what was going on and he gave me the option of changing to Tegretol plus a very strong pain medication(Oxycontin). It was his opinion that the pain medication would not touch the pain in the face but we could give it a try. I opted to try both. With the Tegretol I did experience some let up of the spasmodic pain but still cannot eat and have a very hard time getting past brushing my teeth. As I am writing this, some of the spasmodic pain is returning much to my regret. This is a pain that cannot be properly described it is so bad. I have a followup with the neurologist tomorrow and I am going to insist that he discuss this with me. Most of what I know, I have researched and found myself and to be quite honest, it scares the hell out of me. I cannot fathom having this pain the rest of my life. Those that have suffered through it for years.....I do not know how they did it. I can see just from this short period of time how you might be driven to thinking of suicide. It totally wipes me out. I cannot function because of the pain and everything suffers. My job, my house, my relationships. I do not even answer the telephone because of the pain in just talking. If there is anyone that has had a positive outcome, I certainly would like to hear it. At this point, I have nothing but negative answers. Name: joyce i'm being medicated with keppra and tegratol at this point. this seems to be working for now, not sure what either medication is doing to my system. it seems that i am alergic to a lot of the medications that are given for treatment for tn. actually i think i got it by taking neuronton for a herniated disc.i did not have it befor i took neuraontin i took it for 2 months the pain started then i called parke davis pyser to ask if there were any clinical trials connecting the medication with tn. i was told that there were clinical trials connecting neurontin with facial pain but they could not be released. several days later i received a letter from p.d.p.saying that they would pay for any medical bills that i might incurr due to the facial pain. is there anyone out there that developed tn after being prescribed neurontin for another use such as muscle pain etc? please respond if this sounds famillar to you its driving me crazy. Name: Pattie StoryI was told I have Trigeminal Neuralgia 2 weeks ago. Untill then, I have gone to a number of ENT's. I was always told it was sinus. I underwent sinus surgery last april. Needless to say, it did no good. Now I have started taking tegratol. I can no longer take it because of side affects. I do not know where to go now. I can not live like this. Anything and everything sets it off. I can not sleep, so i feel like a zombie at all times. I have 2 young boys to raise and am tierd of always having to tell them that i do not feel good so i can not play with them. Is there anyone who has had something done that has truly helped them? At 31, I am not ready for my life to be over. Name: Don Williams What are the indications that a drug treatment program is becomming ineffective? My breakthrough is not as painful as it once was, but the instances are increasing? What are the side effects of Tegretnol? Name: julie carlson Please submit the story I sent to the Personal story section. I would like to be on your email list or whatever you have available. Thank you Name: Carlo Javier Over 2-years ago is when I first experienced a terrible pain on the left side of my mouth. Thinking I'm experiencing dental problems - I went to see a dentist right away. I was surprised when the dentist couldn't see anything wrong from the x-rays he took. He told me he couldn't do anything for the extreme pain I'm experiencing since there's nothing wrong with my teeth - he perscribed antibiotics and pain-killers that didn't do anything for the extreme pain. I was so frustrated and puzzled, to say the least, that a pain so terrible can not be cured. In the following days, the pain I was experiencing had progressed. The stabbing pain in my left (upper and lower) mouth was coupled with electric shock-like sensation and has become so sensitive that a wind, the water from showerhead or just drinking water, eating and brushing my teeth would trigger an attack. I came back to the same dentist, begging him to do something to the horrible pain. He checked my mouth again and said he couldn't see anything wrong then he told me something I've never heard before - he told me that he thinks I have neuralgia, since I didn't know what neuralgia was - I ignored what he had told me. In the following days I started to lose weight since I could not eat - any food I put in my mouth, even just the flavor of it, would trigger that shocking pain. I also started losing sleep as the pain would wake me up several times in the evenings. My life became miserable - all the people I know could not relate to what I was experiencing. The dentist recommended that I saw an oral surgeon. The oral surgeon operated on my mouth but the operation did nothing to releive the pain. Then I went to another dentist who did 3-root canals on me unnecessarily. I realized then that I've been seeking help from people who had no idea how to treat this type of pain. Then I started learning more about trigeminal neuralgia. When I reached this and another website dedicated to neuralgia and when I saw the description of the symptoms of trigeminal neuralgia clearly matched what I was experiencing - was the only time I admitted that indeed, what I'm experiencing is neuralgia. What is equaly discouraging from the testimonials I read from this and other neuralgia websites, is that there is no sure cure - a lot of the patients who had undergone radiation treatments and operations, had the pain come back on them after a while. The drugs that are being perscribed does not guarantee total pain relief and the side effects are just as terrible. I said to myself this will only be my last resort or better yet just shoot me to end my misery if nothing works. I tried to find pain relief in alternative medicine. Fisrt I tried acupuncture, I went for several treatments but I wasn't getting any pain relief at all. I also tried several herbs for pain relief but that didn't work either. Then I learned about biomagnetic therapy. I started experimenting with static or permanet magnets. I bought magnetic mattress liner and pillow liner and for the first time in a long time I started to sleep well and I experienced some pain relief. Although static magnets brought me some relief - it wasn't really enough pain relief to make a lot of difference. So I searched on. Then I learned about Pulsed Magnetic Field therapy and how it is much more effective that static magnets in relieving pain. Then I saw this instrument called Quantronic Resonance System, from Germany. It was developed after 20 years of research and clinical trials. It is relatively unknown here in the U.S. but has already helped millions of people in Europe and Australia, not only to relieve pain but also to heal a lot of medical problems. The Russians are using QRS in the Mir space station to prevent loss of bone mass of their Cosmonauts from extended exposure to zero gravity. So I decided I'd like to try the QRS and I bought a unit from a dealer here in the U.S. This decission is the best one I've ever made for my health. I received my Quantronic Resonance System last June of 2002 and in my first week of use I noticed that I've been sleeping better and there's a good reduction in my pain - good enough that I started eating well and I started regaining the weight I've lost. After a few weeks of QRS use - I'm almost back to normal. I still have some pain but a pain I could easily handle and far from the horrible pain I've experienced just a few weeks before. I've been using my QRS everyday since June 2002. The terrible pain is now just a bad memory. I've regained my health and my life. Not only has the Quantronic Resonance System releived my terrible pain, it has normalized my blood pressure too - as I've been suffering from hypertension also and all these without strong drugs, no rediations, no operations and no side effects. I found what really works for my pain - I'm very happy with the QRS and what it's doing to improve my health. This is my story - thank you for your time. Name: Xee Xiong Hi, I'm a 23 year old college student who just recently found out that I had bell's pasley. On the day of Valentine's Day I had some throbbing pain in my temple and under my jaw, I thought it was just from lack of sleep and lots of stress so I didn't think anything of it. The next morning, I woke up and my right eye could not shut. I didn't realize that my whole right side of my face was numb until after I brushed my teeth and I couldn't rinse my mouth or spit it out. I was horrified and told my boyfriend about it. We went to the emergency room and that's when they told me that I had bell's pasley. I'm afraid that it's going to be permanant. I guess I never appreciated the way I was until now that I feel so uncomfortable. My right eye gets really dry and then it gets harder for me to focus with my right eye. My sister suggested to take me to an acupunturist, I'm hoping that it works. I've read a lot of other's personal stories and said that the medication that the doctor's give doesn't help. I am praying for a miracle, can anyone please tell me things that they feel have helped them cope through this or get through this. If there is anything that helps, please somebody let me know. Thank you so much. Name: "taz" hi, I recentley submitted my story but haven't seen it on the board yet. I've suffered from trigeminal neuralgia for 14 years now,since having all four wisdom teeth taken out. After a long time of trips backwards and forwards to the dentist/doctor, i was finally diagnosed with this condition. The pain, as you will know, is absolutley mind blowing! Just when you think its gone, there it is again. Mine disappears for a while, then its back worse than ever. I paid to see a neurologist, who offered me mvd surgery, at the time it sounded very scary, I', a single mum to 3 young children. but when the pain returns, they could literally take my head off, anything to ease the pain. This week, it has been worse than ever, usually it is just on one side, however its been on both.No drugs will work, they've tried them all, either bad side effects or they just dont work. I'm now waiting to have a scan then i have to make the decision about the surgery.I really don't want or need this pain for the rest of my life, i can't cope with it! Its good to read everyone else's story, its nice to know that i'm not the only one living with this.Hope everybody finds their cure soon.me included!! Name: patricia Hola, me han diagnosticado el sindrome de MELKERSSON ROSSENTHAL del que no se conocen muchos casos, tambien tengo la enfermedad de CROHN, una de las consecuencias del sindrome de Melkersson es la neuralgia trigeminal aparte de otros sintomas, estaria muy interesada en conocer otros casos de personas que tengan esta enfermedad sobre todo si tienen tambien la de Crohn y saber los tratamientos y la eficacia que han tenido. Gracias. Name: "Lauri" When my sister was diagnosed with Trigeminal Neuralgia, I came to the web to find out more about TN and to hopefully find some answers. The more I read about Trigeminal Neuralgia, on this and other websites, the more depressed I became. There didn’t seem to be any good news from anyone out there nor did there seem to be an answer. Right now, my sister is pain free. We have also heard of 3 other people who went to the same doctor, and are pain free and have been for approximately 10 years. I want you to know there is help out there. In July of 2002, my sister began having terrible pain once in a while when she ate. She thought it was a toothache. She went to a dentist and he thought she had a cracked root. He recommended a root canal but she had to tell him which tooth it was. She couldn’t decide between 2 teeth but by this time, she was in so much pain she asked him to just do a root canal on one of those teeth to get her out of the pain. So he did. The pain didn’t go away. The dentist thought the pain might be something with the nerves, so he gave her Tegratol and she broke out in hives. He then sent her to a general practitioner and he thought it sounded like Trigeminal Neuralgia, but he dismissed the thought because she was too young. She is 26. So, he figured it had to be an infection in the nerve and gave her a bunch of antibiotics and ibuprofen. The pain seemed to get worse. By November, she began having horrific attacks of pain. She would scream and cry in terrible pain. The doctor then sent her to a neurologist. He diagnosed her with TN and started her on Neurontin. The medicine helped a little, but the pain was still there. Once she had maxed the amount of pills for that drug, the neurologist would add a new drug to those she was already taking and then another. Still the pain was getting worse. The pharmacist said that she should be in a coma with all of drugs she was taking. She could hardly function. She couldn’t brush her teeth, wash her face, or even put her make-up on. She had difficulty eating and talking. All of these actions would trigger a horrific attack of pain, which lasted between 5-30 minutes. Then a little good news came. We heard from a friend of mine, that she knew of 3 other people who had had the same diagnosis and had gone to a specialist at the University of Utah Medical Center. He is a Neurosurgeon and his name is Dr. Ronald Apfelbaum (pronounced apple-baum). All 3 of these people had the MVD surgery and all of them have been pain free from the time they woke up from the surgery. It has been 10 years for one of them, 8 years for another and 3 years for another. In order to see Dr. Apfelbaum, my sister had to be referred by a neurologist. She got the referral and saw Dr. Apfelbaum on January 8th. He recommended the MVD surgery. Dr. Apfelbaum has done more than 500 of these surgeries and has a 90% success rate! There are risks, 2% chance of hearing loss (permanent), 1% chance of double vision (goes away in 3-4 months), 1% chance of Bells Palsy. We figured that a 90% chance of a pain free life was worth it. She had the MVD surgery on January 21st, 2003. She has been pain free ever since. I know it hasn’t been very long, but according to the doctor she should not have any more pain. Dr. Apfelbaum said that when he saw the nerve during surgery, a blood vein that was lying on the nerve caused the pain. Since it was a blood vein and not the artery, he could cauterize it and basically remove the problem. He did wrap the nerve with the sponge. He said that the nerve had been quite damaged but it would heal itself. The only side affect she has right now is the withdrawals from the pills from the other neurologist. That is temporary and she will recover from that. She does not have hearing loss, double vision or Bells Palsy. It looks like the surgery was a success. There are specialists out there that do the surgeries for TN all the time and they know all the options available to help with the pain. My recommendation would be to find a specialist. Dr. Apfelbaum knew of more drugs and options that my sister could have tried than the neurologist knew of. Don’t only rely on just a neurologist. Be sure to get a specialist in the Trigeminal area before making your decision. Being a neurologist does not mean they specialize in TN. I know that there are a lot of people out there in terrible pain. I sympathize with you and wish you all the luck in the world. Name: Cindy Bearden In October of 2002, I went to the emergency room of Norman Regional Hospital with sharp stabbing pain in my ear. I had several tests done, including two CT scans, an MRI and a MRA. I saw a neurosurgeon by the name of Dr. Jeffrey Nees who I will be eternally grateful to. Dr. Nees diagnosed me with Glossopharyngeal neuralgia. However, he had never done the surgery and did not want me to be his guinea pig. After much research, and a bad neurosurgeon (Dr. Glenn Schoenhals), I found Dr. Joshua Dowling at Barnes Jewish Hospital in St. Louis, MO. Dr. Dowling explained the surgery to my husband and I in great detail. I had the surgery, a right subocipital craniectomy, on 01/22/03. It is now 02/02/03 and I feel like my old self. There is no more pain in my ear or throat. I had no residual pain. I have no additional nerve damage. This has been like a miracle. I would recommend this surgeon and procedure to everyone. Name: Char My story starts in 1996. I started with this horrible pain in my right side. I went to an emergency clinic and they tried to tell me it was a migraine. Worst migraine I'd ever had! I finally got in to my primary care doctor. She had a husband with this and she knew what it was.. Trigeminal Neuralgia. She put me on a dose of Tegretol that did nothing and gave me the name of two Neurosurgeons. She told me they did this procedure on her husband and he was just fine. My insurance only covered one of them so he was my choice. He had me get an MRI to eliminate other problems then I was wisked off for decompression surgery. For a few weeks I was pain free, then it returned. I was again on Tegretol. And while on it, my left side started! So again I was told my only option was decompression surgery and for my right side.. a partial nerve clip. I was told that it would leave my right side feeling numb but it would be pain free. WRONG! I still have the 'TN' pain. My insurance changed last year and I was able to go to the other neurosurgeon who was giving alcohol injections for TN. I had new MRI's taken. He looked at them and listened to me for about 1/2 hour. I explained my symptoms which include clutching my jaw and make it feel like it was in a vice and someone just keeps tightening it, and mine is down past my jaw bone. And the new ones on my right side that I knew were from the nerve clip which are, while it feels sort of like it's coming out of dental anesthetic, it burns like it had just been scalded, and yet stings and gives a shooting kind of pain to the touch. He told me that his opinion was that my symptoms weren't consistent with TN, that I had what is called Atypical Facial Pain and Anesthesia Dolorosa from the nerve clip and that the alcohol injections would just further damage my nerves unnecessarily. He sent me to a Neurologist and he confirmed. I am now on managed care of the meds above and am at peace most days. The Anesthesia Dolorosa pain is as bad as the AFP and harder to manage. I feel so informed now I have the internet.. if only I'd had it then! I was alone and told that it was a very rare condition and I was in so much pain, I took his word. Had the first doctor listened to me, I would have been saved at least 2 surgeries. And as soon as my pain continued, he wanted nothing more to do with me and sent me packing back to my primary care doctor to try to manage my pain. Since I've had my computer and I read other stories of people with true TN, I wondered why I didn't have the same pain. Now I know. I've told my story to remind everyone to please, please.. no matter how competent you think your doctor is, get a second opinion! Their motives might not always have your best interest at heart! Name: "taz" My pain started not long after i had my four wisdom teeth removed at the local hospital, that was back in 1989.For a long time i was backwards and forwards to the dentist, as i was convinced it was something to do with this,I paid to see the consultant who said there was a problem with my jawline, and was given a shield to wear at night to stop me grinding my teeth, I must admit i wasn't totally convinced about this. After quiet a while of wearing this "thing" every night i went back to my own gp.All i got was painkillers which obviously didn't work. My dentist at the time was wonderful with me, but he himself thought there was more to this. After many trips to the dr's, he finally reffered me to a specialist who confirmed i had trigeminal neuralgia.I was then put om tegretol.This had the side effect of making me drowsy, and as time went on i had more attacks of the awful pain.I began to think everyone was sick of hearing about it. A few more years went by, the attacks were usually around 4 months apart lasting around 5 days. i resigned myself to putting up with the pain. During 2001, i had a really bad attack.i went to the doctors who gave me stronger painkillers and gabapentin, however i had a reaction to this and the pain was worse than ever! i thought my head was splitting in two,Once again i paid to see a neurosurgeon at a different hospital this time.He was really good and explained everything to me,he suggested the mvd operation. I was to have a scan first which would take a while as there is a long waiting list,so two years later, here i am , still waiting!. Since this, i have had several attacks, the most recent being last week, It starts with a tender area on my head, then the side of my face and neck feels hot and sensitive, then, like lightening, the pain comes. it's unbearable. I can't brush my hair, it hurts to laugh and talking can be a problem as well.All hard work as i am a single mother to three young children. When i am without pain, i think, maybe i could put up with it, its a serious operation and am scared by it. But once the pain comes, they could do anything, just to take it away. I know how everyone who has this feels. i try not to let people know how much it hurts, as i feel sure that after nearly 14 years , they are tired of it all! It can make you feel isolated, it makes me angry, i'm only 30 and have to have this every so often! I'm going to get back in touch with the neurosurgeon, see if he has forgot about me,will keep you informed. any advice would be appreciated. thanx. Name: Maggie Over the Christmas holidays my husband and I had some sort of of sinus thing. His gradually got better - mine didn't. I developed this awful earache - first in both ears, then worsening in my right ear. Eventually it started hurting in my right cheek and jaw. I went to the doctor and he prescribed antibiotics for the sinus infection and had me come back in one week. By then I was having awful pain in the cheek and jaw. He made a possible diagnosis of TN and prescribed Neurontin and pain meds plus Lidocaine jelly. A few days later, while applying the Lidocaine inside my cheek, I felt a large lump at the base of my gum on the right side. I went to the doctor the next AM and they sent my to my dentist to rule out any dental problems. AFter X-rays showed no dental problems, although my teeth by then were so sensitive I could not even touch them together, not to mention eat on that side. He felt that the lump was just the way my bone grows on that side. I had gone from cold foods causing pain to cold or hot foods killing me. The doctor sent me for a CT scan of my sinuses, which showed no problems. He prescribed Dilaudid for my pain. I took one with no help, then discovered it was a morphine derivitive, which I am immune to the effects of. I went back to the Darvocet I had. I went by the doctor's office unannounced on the way home from work the next day - Friday - because I had not enough pain meds to get me through the weekend and I was in awful pain. I got another scrip for Darvocet. They nurse called later than afternoon to tell me she had called it in and I was crying and sobbing in pain. I had not cried over pain since I was 7 years old and I am now 52 and have been through severe medical crises before. The Darvocet every 4 hours would not do it, so I tried one pill every 2 hours. By Saturday evening it was not working. Saturday, 10:30 PM I told my husband he had to take me to the ER for some pain relief. They are so slowm but I finally got to a room about 11:30. I told them I can't take morphine, but have had Demerol with good results before. GAve me big IV of Demerol - 45 minutes later not help. Gave me another big shot of Demerol - same thing. The doctor told me he didn't know anything else to give me but some of the pain meds I am sensitive to (Hydrocodone and Oxycodone make me a human itching machine). They gave me Lortab with big dose of Benadryl. I had had a CT of the brain meanwhile - no tumors. Finally, after about 30 minutes I felt some relief. They had to give me another dose before I left at 5:30 AM, and a scrip to get filled. We went to the only place open at that time of night - Kroger. I was feeling much better, comparatively. That was two weeks ago. I was having to take the pain meds every 4 hours or I couldn't function. Of course, between the pain meds and the Benadryl, I was a zombie. I still had to drive to work to teach school, and I tried to time the meds so that I would not be DUI. The worst day was one Friday morning, very overcast and dark, when I could almost not stay awake to get to school. I was scared. Gradually, I started to get some relief and the last week I have been able to wait until I got to school to take the pain meds. I have alternated between Oxycodone and Hydrcodone. the Ultram did not work at all. the doctor has been increasing my Neurontin gradually I am up to 900mg daily and will increase to 1200 this week. I have been able to reduce my pain med intake a lot this week. That is until today. All of a sudden I am hurting badly again. I have had to take two doses of pain pills today, which is a lower dose than last week, but maybe I am not getting better, maybe I had a remission of short duration. I had and MRA for arteries this past week, and an MRI. They called me back the next day to do more refined MRI of my ear canals and had me really scared that they had found something. I saw the doctor the next day and he was frustrated that he only had the MRA results, which showed no arterial problems. They called yesterday and the MRI has shown some sort of swelling or inflammation deep in one sinus that is pressing on the trigeminal nerve. I can't get an appt with my neurologist for 3 weeks, but he would probably be doing the same treatment. Strangely, over a year ago I developed horrible migraines, which also started with an unbearable earache. I could hardly make it and was only able to get relief with prescription migraine meds such as Maxalt and Amerge. I also had Botox injections in my head and the back of my neck - $1200 course of treatment that did not give much relief. The earaches leading to the migraines started when I was moved into a moldy, leaky, nasty trailer for a classroom in August, 2001. After I moved out of it in June, 2002, the migraines gradually decreased until I only have a moderate one about once a month now, instead of almost daily. I have horrible allergies and take allergy shots. Evidently it was the toxic mold in the trailer that was causing the migraines. The doctor says that the swelling in my sinus is not any sort of tumor or growth and we don't know why the antibiotics have not helped it. I hate the icepick in my ear, but the pain in my jaw, teeth and cheek is enough to drive me crazy. I understand why people used to commit suicide with TN before modern pain meds and treatments helped. I have a friend whose mother had to retire from her job after trying to cope for a year with TN. One day before I got the right pain meds, I had to cancel one of my classes because I could not bear to talk. I feel very fortunate to have the wonderful family doctor I have, who is a great diagnostician, and is very supportive. I suffer from clinical depression, which is controlled well with medications and have a host of other medical problems. He never brushes me off and treats me as though it were all in my head. It is a good thing I also have a high pain tolerance or I don't think I would be able to work. I hope they find a way to treat the sinus swelling so I don't have to have this the rest of my life. My pain is the constant sort of pain, with stabbing, burning pain intermittantly on top of the aching and throbbing. I have also been seeing a great chiropractor since June, for back pain. He has successfully treated my back pain and is now trying to assist with the TN. He is a big help, too. As much as I am hurting, I still feel lucky to have such great medical care. Name: Lynn I suffered from bouts of trigeminal neuralgia over a 3-year period, with intermittant periods of total remission. The diagnosis was made by a leading neurologist in New York City. Each time an episode occurred, I was prescribed a medication, Trileptal, which succeeded in alleviating my pain. However, with each episode I needed more of the drug and eventually it stopped working for me. I was on a high dose, feeling too drugged to drive and still having excruciating pain. Eventually, I was barely able to speak and had to eat through a straw on the opposite side of my face. I was desperate, and on the advice of the neurologist I was seeing, was considering gamma knife surgery. As a last resort before surgery, I tried acupuncture, which provided no relief. I was searching the internet for stories of alternative treatments and came upon a procedure called "atlas orthagonol". There are only a few chiropractors in the country who are trained in this procedure, and even fewer who have the machine developed specifically to administer the very subtle (and painless) manipulation of the upper vertebra on which the skull sits. The manipulation corrects any imbalance of the skull as it sits on the atlas vertebra, and thereby relieves pressure on the spine and surrounding nerves resulting from the misallignment of the skull. It sounded logical to me that this could work. I luckily found a practitioner with a machine in New York City. He x-rayed my skull and found a ten-degree misallignment. After the first treatment, my pain was 80% gone. Now, after three months of treatment I am pain free! I go for corrective treatments only when I feel the misallignment (which can trigger the nerve pain again). This treatment certainly won't help all who suffer from TN, but I know it will help some. I urge all of you to at least consider the treatment. It's non-invasive, painless, inexpensive and in my life a miracle. I would be happy to answer emails, questions, etc. If only one more person's pain is relieved, I will be grateful to have helped. Name: moana About 2 1\2 years ago I started getting electric shooting pain from my left top jaw to my left temple it just got worse and worse, each time getting stronger and stronger. then in the middle of the night it just came full on at about 2 am in the morning I just screamed in absolute pain. I woke my husband and he thought it was a dental problem so first thing that morning I was to scared to talking because that would have bought the pain back, sure enough no sooner had I spoken to my dentist I was sitting on the floor screaming in pain again. Got out to the dentist and it happened again, the lady in reception actually said the `N` word and as I got in to see the dentist he took x-rays and suggested I go and see my doctor as it was not a dental problem. Straight from GP I went to ENT up at Waikato Hospital. Got a doctor who came up with the last diagnosis TN. Ammitrypteline- made me sleepy tegretol is the only thing thats kind of toned it down a bit GP has just recently perscribed epilim which I feel doesn`t work. Now these days when the pain comes I get a pins & needles pain in the left side in my face and cringe as I know what to expect. Thank You for your time, feel free to eee me. Moana Name: Melissa I started having pain in 1995. By 1997 I was suicidal. I couldn't deal with the pain. Every doctor I saw about it, claimed it was a Dental problem. The dentists didn't agree! I was, finally, involuntarily committed into the Psychiatric Ward of a hospital. The diagnosis was severe depression which was manifesting facial pain. So, I was now being told by a Pyschiatrist that my face pain was all in my head. I was on depression medicine for 4 years. Amazingly, depression lightened, however, the pain didn't. Every doctor visit I make, for any reason, I explain this burning, face wrenching pain that runs from my jaw to the base of my eye. They seem to ignore my pleas for help. More depression meds! My skin will become extremly hot. I can feel a furnace on my skin. This is how I know I am about to have a most excrutiating experience. In December 2002, I finally went to a Ear, Nose, Throat specialist. He diagnosed my pain as Trigeminal Neualgia. He prescribed Tegretol, 100mg day, for one week. Then, when I said the pain was still coming and going just as strong, he changed it to Elavil. I decided I would see a Neurologist. That is where I am today. The Neurologist was visibly disturbed that the Ear, Nose and Throat specialist tried only one week of Tegretol and only at 100mg. I have just had an MRI, to rule out Multiple Sclerosis. Yet, the neurologist agrees that I have TN. I am now on 900 mg of Trileptal day. So far, it doesn't touch the pain. The doctor said it would take 3-4 weeks to get into my system! He prescribed Darvocet until then. The pain is quite severe. I have tried to break the bones in my face, just to divert the pain. I wasn't strong enough. Is there anyone who has problems with exteme heat on their skin before the pain begins? Thanks for listening! Melissa Name: Jill I have been diagnosed with trigeminal neuralgia and underwent a MVD surgery last year, which didn't stop the nerve spasms. (I apparently have an unusual ridge at the base of my skull, which made it impossible for my neurosurgeon to see where the artery was coming in contact with the nerve stem. He placed three "pillows" during my six-hour procedure in hopes of relieving the compression site, but the surgery failed.) Throughout the time I've been dealing with TN, I have experienced another kind of facial spasm, which I assumed was a part of TN. These are facial muscle spasms on the same side (left), which force my face into a grimace. They aren't painful the way trigeminal nerve spasms are, but over time, they have become more intense and frequent in nature. Now, I can't control them the way I could before, and my left eye is forced shut. While researching TN on the web, I came across a definition for hemifacial spasms (HFS), along with a picture of someone having a hemifacial spasm, and it a mirror image of me. I just wanted to share this information in case anyone else might be having a similar experience. Hemifacial spasms are the result of a compression point to the seventh cranial nerve (The fifth cranial nerve being the trigeminal nerve and the source of TN symptoms.) The seventh nerve stem controls facial muscle activity. In rare cases, an artery presses on the stem of this nerve, causing the facial muscle contractions that I've been having. Like TN, the most successful treatment is the MVD surgery. Certain things can trigger HFS spasms, like yawning, laughing or smiling, opening the eyes wide, and bright sunlight - to name a few. In VERY rare cases, both the trigeminal and hemifacial nerve stems are compressed (in my case, the theory is that it's the same artery, snaking around to come in contact with both nerve stems), causing a combination of both trigeminal nerve spasms and hemifacial nerve muscle contractions. This combination of both compressions is called, tic convulsif disease, and is usually caused by a severe head injury. (This fits for me; I had a violent, backwards fall in 1999, striking my head and driving it so hard into my chest that I shattered the disk in my left jaw hinge and knocked the pieces out of the jaw. I fell over ambulance equipment, of all things, when they came to take my mother to the hospital.) I just wanted to share this experience in case anyone else has had similar symptoms and thought they were related to TN. It might be worth further investigation. Admittedly, I'm still reeling from this latest twist to an already difficult challenge with TN. I probably don't have to tell you that triggering HFS spasms is frightening, because they could then trigger TN spasms. My biggest opponent is, Fear. Thanks for "listening." I wish you all calm nerves and fearless days. Peace. Name: Dorothy I am the Aunt of a 20 year old niece, who has suffered with facial pain, migraines, and seizures for nearly 2 years. A few months ago, a doctor in the ER mentioned Trigeminal Neuralgia as a cause for her discomfort. Sometimes the pain was so bad, she would go to the hospital for shots of Demerol (unsure of spelling). She found this was the only way to kill enough pain to sleep. Oddly enough, sneezing would cause her right cheek to bruise and the pain was excruciating. Two years ago, she suffered a massive sinus infection. She was admitted into hospital to administer antibiotics intravenously. Two weeks later she was still in pain. Two different ear, nose and throat specialists disregarded her with no explanation. After cat scans, mri, cardiologists, neuroligists and 2 GP's we still had no answers, but enough medications to open a pharmacy. Every drug had a side effect that just added more stress. However, yesterday I took my niece to meet my former GP (this doctor has quit conventional practice to open a clinic called The Headache and Pain Clinic, Toronto, Ontario) with as much info on TN that I could find, including some of your stories. He dismissed TN because her facial skin was not sensitive to touch. He did however conclude that she has TMJ (temporo-mandibular joint dysfunction) The jaw muscles on the right side and the roof of her mouth was extremely sensitive and touching it sent shock waves of pain into her face. The treatment is calcium and magnesium. She will undergo 4 initial treatments, once a week, with Myer's Cocktail. An intravenous nutrient therapy containing vitamin C, magnesium, calcium, B6, B5, B12 and B complex. This mixture will also help Migraines, and the stress and pain that was probably causing the seizures. There are a few side effects that don't seem to bad, lightheadedness, hypertension and the best one is caused by the magnesium and\or calcium. She will experience heat during the injection that starts in the chest and moves to the vaginal area. Apparently some female patients have reported the experience caused orgasm. Cool eh! The cost will be $75.00 Cdn for each treatment. We're going to give it a try. My niece had lost her job 18 months ago, because she was in a customer service field and wasn't smiling all the time. Pain will do that!!!! Her family is pulling together to pay for the treatment. I hope this works. PS: Doc also believes that the trigeminal nerve is suffering from the TMJ and the bruising in her right cheek is caused by blood vessels reacting to the pain in the tissue. She may have a form of Hemophilia too. Much more investigating to do. I'll follow up after treatments to let you know how she's doing. TTFN..................D Name: tasha I am writing this story for reasons unknown. I will be seeing neurologist in the morning after seeing my family doctor today. Let me back up, my pain started about six weeks ago. I went to the PA at our Doctors office and was diagnosed with a sinus and ear infection. I was given an antibiotic and ear drops for the infection. I also had a "crick" in my neck and was prescribed a muscle relaxer for the stiffness. After a week the pain in my ear had become unbearable. I was sent to a ear, nose and throat specialist where I was then diagnosed with TMJ. I was told to continue the 2400 mg of ibuprofen until the inflammation went away. a week and a half later I visited with my dentist who proceeded to make a mouth piece that costed me $340.00 all of which I would have to pay since my insurance did not cover TMJ. Without xrays he told me that he would treat me for the TMJ unless something else came up??????? Funny huh. Two weeks later through the Christmas holidays I suffered maxing out the Ibuprofen and Darvocet. I went back to my doctor this week and he ordered a sinus CT to include my TMJ. Guess what? No TMJ problems. The radiologist seems to think I have facial neuralgia. I was put on Tegretol and to continue the Vicodin and Ibuprofen. I have two small children and it is very hard to stay awake. I have no idea what is going to happen and quite honestly after reading the stories on this website it scares me to death. The pain is unbearable throught the left side of my face. It is unexplainable. My boss at work seems to think I should be ok after I see the Neurologist but I'm not so sure. I hope those of you reading this get some relief soon. My prayers are with you all. If you have any suggestions as to what I can do to make this a little less frightening please feel free to respond.
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