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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 | |||||||||||||||||||||||||||||||||||
