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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: Link I was finally diagnosed with atypical face pain (I hate the name, it sounds like one is a total wimp and the pain isn't really in the face) about 11 months ago. Actually the doctor I had at the time thought it was a sinus infection, then trigeminal neuralgia, then was clueless...I was referred to a neurologist, had the cats and mri and told I had face pain. Thanks doc I thought. He gave me tegretal (sic) but I had such an adverse reaction I ended up with the neurontin and have been on it since last February. I also tried accupuncture, but it just made the pain worse. The doctors wouldn't prescribe any narcotics (i.e., vicodin) because they didn't want me to get strung out. I told them I didn't care about that,I just wanted the pain to go away. I finally found a PCP who said the magic words..."Quality of LIfe" and perscribed the vicodin as back up to the neurontin. It makes me feel like I have some control over my life to be able to medicate as needed. Some days it is worse and I need more of the vicodin, some days I take less or none. It has pretty much wrecked my life. I can't work and am very depressed. I have been a professional for many years and the fact that I am not productive tears me up. Fortunately my children are grown and don't need me for complete support. I am also a bi-lateral below the knee amputee, but I was able to work through that diability and support my family. This affliction is far worse, it just won't go away. I haven't found any anti-depressants that I can take, the side-effects have been just horrible. They turned me into a complete noodle. I prefer some pain to being a zombie. But, I haven't found any cure for the depression either. In conclusion, the drugs keep me from screaming but the trade off is being a big dope...the depression is the bigger problem now. Any ideas?? Name: Cyndy One year ago I began having pain in the bottom of my left jaw. I made the trip to the dentist to discover through xrays that my teeth were fine. The pain increased. I went to my medical doctor and he diagnosed TN. He was familiar with it since he had had it for several months. I began a series of drugs: anticonvulsives, painkillers, and steriods. They only helped for a little while. The pain kept coming back only worse. I got on the internet and found the closest gamma knife machine in Lexington Ky about 80 miles from my home in Louisville, KY. There I met Dr. Byron Young and his wonderful staff. I was treated with the gamma knife machine in June. I had relief until the day after Labor Day. I was on the golf course and it hit me so hard I could barely drive home. When I got home I had such bad pain I was in the floor and could not contact any of my family so I called 911. When I got to the hospital they thought I might be having a stroke but I knew I wasn't. I finally communicated what was wrong and they calld in a neurologist. He contacted Dr. Young. I went back down to the UK Medical Clinic and Dr. Young. He gave me the option of another gamma knife or MVD which is major surgery. I had had enough and opted for the surgery. I had it in Sept. It was all the pain of a major surgery but none of the TN pain. I am recovered from the surgery and feel fine. I have a slight numbness in my jaw and sometimes "fingers" of pain or "pins and needles" but nothing like the pain I have had previously. Dr. Young removed 2 blood vessesls from around my trigeminal nerve and placed a sponge around the newve to protect it. I won't say I never worry about it returning because I do. I will never forget the pain and the trauma. So far I am pain free although it hasn't been very long (this is Dec.) and there are no guarantees. I am still very thankful for any time I can get painfree. Anyone living near Lexington KY should visit the UK Medical Center and Dr. Young. He is head of the neurosurgery clinic and very expert in TN. They have a website for more information. Name: Wendy I have Arnold Chiari Malformation and had brain surgery in 2002. Started noticing facial numbing in 03. Had dental work done in June 05 and my nightmare began. It started on the left side-where my teeth were pulled. It is now on the right side only. It starts with temple pain, goes to the ear then the jaw and behind my ear goes numb and my face feels like it is on fire. My right eye twitches and my already screwy vision gets worse in the right eye. It lasts for days and then goes away for days then back again. I went to ER 2 days ago and got dx. Going to neuro today for 1st time for this. Anyone else with Chiari? Name: Deana In August 2001 I had a sharp, intense pain down behind my right eye. The pain spread to my face, neck, and into my right arm. Since then I have not been without pain on the right side of my head. On bad days the right side of my face swells, my right eye swells to a small slit, my whole right side becomes very week, and I have to stay home from my job as a teacher. Over the past four years I have developed numbness and tingling in my right hand and arm, in both feet and legs. The right side of my face, my eye, and neck swells and hurts at will. I have been to Johns Hopkins and presently at Cleveland and so far no diagnosis. They have spoken of a rare cluster headache and neuralgia. Has anyone out there had these symptoms?? Name:
"Debbie" My pain started with a 6 month check up to a new dentist. I was told my 4 silver fillings needed replaced.(i had no pain but trusted the dentist that this was needed for preventative care) After i got home and novacaine wore off i knew something wasnt right. All 4 teeth were aching! Went back and ended up needing root canal on one. Had that done and have been in pain every since with pain in front top and bottom teeth and random teeth all on right side along with pain that shoots up into my temples and head. I havent officially been diagnosed with tn but am on my way to see nuerologist after seeing 4 dentists, endo, family dr.,ent,eye specialist and not having anything show up on emergency room cat scans or blood work .I just want my pain to end like everyone else here. I was a vibrant healthy 32 female always smiling kinda person and now i cry every morning i wake up and all thru the day and am probably experiencing depression now from this but am trying to not let it get too me that bad but it is sooo hard to deal with jaw pain and gland pain and teeth pain and eye pain and headache pain and always having to pop some kind of pain pill to help! I just wanted to share my pain i guess to make myself feel better and hope that people who read my story can also pray for me as i plan to do for them for i sympathize and know how bad this hurts and affects all our lives! I also wish that more money would go into research for this for i feel if we can clone animals and humans , why cant we fix these kinda problems yet??? I dont understand but perhaps god wants me to learn some kinda lesson from all this and actually i am learning lots of lessons! Bless you all and may you all find the strength to make it thru another day and know when your alone i will be thinking of you and so will God!!! Name: Amanda Rose After a Year of agony every few weeks where The pain was so unbarable I would be scratching other parts of my body so i would not concentrate on the pain in my face, I Stumbled on cell salts, This worked well after about 20 tablets every time it hurt, but they stopped making them... any way tried Blackmores Phosphourus compound and if i feel an increase in tics or that dreaded pain comming on i disolve a tablet in my cheek and it is gone.... Name: susan I am in disbelief about the whole thing. I got my teeth cleaned 5 days before I experienced any pain. I feel like I can make it go away with positive attitude. That does not look like the answer, but I just can't have this. I was told 2 days ago that it might be TNA. I can't believe it. I am in denial I am sure, but I want to beat this. I have so much life ahead. I don't want to be in pain all the time. What really seems to help me is Advil. Will this continue to help me or am I living on falset thoughts. I am confused and scared. Please some one help straighten all this out. There is suppose to be an MRI to rule out tumor or whatever..I am 46 and have been suffering about 1 and a half months. I am scared. I can't sleep or eat right.. Sorry I am going on and on, I just need answers. Thanks Name: Frank J. Name:
"AR" Hi, I had facial twitching after a brief illness. I would also notice it after drinking alot. I was told I would have to have surgery to stop it because it lasted for 5 months straight. I did some research and found out that I could possibly be low on potassium. I went to the store and bought 2 large sports drinks called Powerade. The twitching stopped immediately. Some time later, I became exhausted and the twitching started up again. I tried 2 large Gatorades but they didn't work as well [possibly a different amount of potassium in them than the Powerade.] Every time I got the twitching later on, I just drank a sports drink and it stopped. I never had to have the surgery at all. When I mentioned this to members of the Hemifacial Spasm group, they all told me I was a liar, but I asked them to try it and see. Name: "nana" I have had intense atypical facial pain for the past two years.The symptoms began after a minor car accident. I have been to many doctors and have tried all kinds of medications with no positive results. Recently there was an article in the local paper about the Egoscue method for controling chronic pain. I went to a workshop and then hired the consultant for a six session program (It's an exercise program). I have had some improvement. Check out the website, www.egocue.com and the book by Peter Egoscue, Pain Free: A Revolutionary Method for Stopping Chronic Pain. Name: Charlotte I was diagnosed at 23. I believe I have been suffering for many years before that. The number of dentists I have begged antibiotics off is insane! When I was 23 it all came to an head. I never would have believed pain like that was possible. That attack went on for 3 weeks before any relief was felt. I wanted to die. It is the one time in my life I have ever considered killing myself. Had it not been for the support of my husband, I would have. I felt so much guilt over that. I love him so much, but I could see no other escape from the pain. I have a real belief that only other suffers can even begin to understand what TN suffers go through, but the support means more than he could ever know. I see his face when I am having a bad attack and it looks like it's killing him. People don't get the effect this horrible condition has on the people who love you. What I want to tell people is that we all have the strenth to cope with this. It has taken a while, but TN no longer control's my life. You do get there in th end. I still get the pain, but I know I can get through it, and if I can, any-one can. Name: Jen They dont know whats wrong with me. I got the first attacks after I had my daughter in 2000, after trying all kinds of pain meds, like vicodin, darvacet ect, the doc decided to inject a shot of coritsone in my super orbital nerve, above my eye. That worked for a little while. Then about 2 years later it struck again. The shot did not work this time after going to the emergency room and being doped up on morophine,and after seeing a neurologist and getting shots in my neck, a few days later it was gone. Last year it struck again at Christmas time. It lasted for about 2 or 3 weeks, I thought I had TN, the neurologist diagnosed me with migranes, and gave me some samples. It seems that Neurontin helps, although it makes me very dizzy and sick to my stomache. I can feel the nerve in my eyebrow and the ones that go back over my head, and also, a tingling pain that goes down the side of my face to my chin, and along my cheek bone and side of my nose. This only happens on the left side of my head. Now I think it is coming back again.Can anyone help. Does this sound like anything any of you have had? Thanks for your time. Name:
"Blondestar" I had jaw surgery 3 years ago, and the mental nerve running across my chin was severed in the process. Now I have chin and lower lip pain daily, and am being treated with Neurontin. I want to be able to get off this, but when I try I cannot stand it. I feel like a rubber band is stretched too tightly under my chin skin, and my lower lip stays really chapped and dry all the time. It is really uncomfortable, and I wondered if anyone knows of something else that could be done surgically to fix this problem. Name: Chuck I'm in a lot of pain and none of the drugs given to me help. Would surgury help? Could this be from dental work? What do other people do? I wish this pain would stop... Name: Margaret Hey all, I am just wondering if anyone here has been diagnosed with NICO, or "cavitations" If so, what kinds of treatment did you have, and was it successful?? Please let me know...I was recently diagnosed with NICO, and am not sure what to do from here...thanks! Margaret Name: Rene Hello, my husband severally beat me in 2003 soon after I had tooth pain, then jaw, did what you all did dentists dr and the like until finnally found out about the monster trigeminial nuralgia, WOW I have now burning spikes of pain jaw ache all on the left(he was right handed) I have left him but not been able to also leave this pain! I have had an MVD that made it worse, nerve blocks help for 2or 3 days but it's something so I was doing it every week for a while, I tried the ghamma knife too, now I am on radio frequency. Had my second yesterday. So we will see. first was two weeks ago and was a little help and I mean little. I am on zoloft now. Of course I am depressed. I have been off work for 4 months and fear I can't go back. I am now a single mom..what will I do. The church has been helping me. I take 800 dollars of pills a month. what happens when work finally fires me for being gone so long? the pain & what if's haunt me. I am slim pretty I have a sense of humor. I want life. I am fighting to get my old life back, or cope with this new version. Does anyone understand?? Rene' Name:
" Plushkanyc" One day a pvc pipe fell from a building and hit me on my face. Since then its been a downward spiral. At the time, I was already enrolled to start law school, which I did, but now I wish I hadn't. How did I know that the school didn't provide prescription drug insurance and that neurotin/gabapentin costs nearly $500/month at my dose (3600mgs a day)? Anyway, the drugs stopped working. My neurologist basically dropped me saying he didn't know what else to do for me (after trying 1 drug!) I'm on Trileptal now (free samples for a month, then I don't know what to do) but it isn't working either. The semester is halfway over and I'm so far behind. It hurts so bad sometimes there seems like there is only one way out, and I know everyone reading this understands that feeling. I just want someone to take the pain away!!!!!!!!!!!I would love to hear how anyone has been able to successfully cope with the pain and the additional frustration of no one helping you find a solution. Also, any non-drug treatments that have worked would be good to know about. Good luck to everyone and hang in there! Name: "dad's kid" I've read the stories here, and most of them are first hand accounts of trigeminal neuralgia. Actually, It's my dad who's suffering from TN. We knew about his TN about 5 or 6 years ago. My dad is a development worker for third world countries. He started community development in the poorest of countries in 4 continents. Some of the places that he worked in are Nicaragua, Bolivia, Haiti, South Africa, Congo, Zambia, Philippines, US and Dominican Republic among others. I can say that he is a fighter, because he still continues to help fight poverty in these countries while at the same time fighting a personal battle with TN. The doctor told us that TN is 30 times more painful than a regular toothache and it is considered one of the most painful condition that a person can experience. My dad resorted to personal chakra healing, alternative medicine, accupuncture, yoga, local plant extracts, teas, regular exercise, healthy diet and virgin coconut oil. However despite all this, he still have seasons of pain. Sometimes my dad won't eat nor get up from bed for days. We think that TN is also a stress-related ailment because he always experience waves of attacks after every field visit to Africa and the Americas. My dad will never stop his fights though. I think that his fight against poverty is what drives him to fight his personal struggles. We still feel helpless when he has attacks... but now, me and my siblings do not fear because we have seen great courage from our dad in times of adversity. We have seen great devotion, love and passion from him. I hope that all TN sufferers will have families to support them and a cause to fight for. Tatay (dad) I love you. Name: Louise After having this condition for 20 years, and having been to countless physicians, I did some research when I got my computer and found my answer myself. I had my doctor prescribe carba- mazepine (generic Tegretol. This was like a miracle to me, but now, after a few years I am having monstrous night terrors, which may be, according to a Psychiatrist, an interaction between Zoloft and Carbamazepine. Even though I hadn't taken any of either med this weekend I had two terrible nightmares....now I'm so afraid to go to sleep at night! I need both those meds, especially the carbamazepine as the pain and shock of an "attack" of Neuralgia (it concentrates in my right ear), is too much to bear. Any one who can tell me how to avoid the nightmares, or if any other med will do as well as the Carbamazepine? Louise Bove...I am 76 years old. Name: Barbara I have had AFP for almost two years. The pain seems to get worse as the day goes by. I have tried a variety of doctors, chiropractors, PT's, acupuncture and meds with little results. Right now I am on Zonegran and so far it hasn't helped. However, I am not on the max dose yet. All of the other seizure meds have upset my stomach. I am about to try the Egoscue method of exercise that is supposed to alleviate chronic pain. I'd be happy if I just felt a little better. I'd like to know if anyone has had any luck wiht any kind of treatment. Even painkillers don't seem to help. Name: ABBIE I just wanted to correct Neurocare Associates not ass. That was a typo mistake. I read what I wrote and had to correct it because it didn't sound to good. I read these stories once a week and I know how everyone feels. I call my pain the "monster" and he just doesn't want to leave my face. He lets me know that he's still there. The break through pain scares me, but then it goes away. Up until a year ago, it was constant and I had thoughts of suicide too. Who wants to live in pain the rest of their lives. There's allot of people out there that do. God bless them all, abbie Name: Tina i have told my story before here i am in the years 2000 and 2002. i am the first to have a pens implanted for my facial pain. since i have told my story about my pens unit others have decided to follow my foot steps. kimberly rae hi i know you are reading this and i am truely happy and thankful you are doing so well with your pens i DO hope you and the others are finaly free forever of this ugly monster! . at any rate i am here to tell people that when no meds work and gamma or m.v.d. is not an option that people should inquire about a pens unit. they work beyond brilliantly exellent. and if anyone would like to learn about them they may go to www.opuslinks.com . my story isnt there but there is a few really awesome ones with happy endings . also some links with info and helpful suggestions. also to find people in the same boat braintalk.org is good to meet others and post questions and messages when you feel alone it is allot worse then knowing that you are not alone. and most of you are not alone and you will find that out when you vist some of the sites i mentioned. i pray more of you find a path to freedom and painfree living, i hope the pens unit will one day be accepted as easy as all the meds doc put us on. it seems a shame to have to be on so much drugs and the affects of it on ones body and mind,... when a pens unit is better . i wish it was not used as a last resort and more people could get one. what a dream that is. peace and love always and olny. Name:
"Cuencana" In June 2005 my husband and I were traveling in Europe when all of a sudden I had this terrible pain in my jaw. I could hardly stand the pain. But it lasted only a few minutes and then I was okay. The following months I would have an attack about once a week and then a week ago, I started to have an attack every few minutes. The pain was so severe that I agreed to go to the dentist thinking that maybe a tooth had gone bad. The dentist couldn't find anything wrong and suggested that I had TN and prescribed vitamin B injections. I started the injections and at this writing they seem to be easing. I appreciate reading the stories submitted because I know now that mine is not an isolated case. The pain is horrible and I hope my story will help someone. Name: ABBIE Just a brief update. I first posted in Jan of 2003 and still to this today, I have undiagnosed facial pain. All though with the meds that I'm on, it's better controlled. I'm back to work, allthough, its part time and I still get breakthrough pain. I must say that I'm doing much better. I went to see a neurosurgeon up at the Sands in gainesville, fl whom said that I was inoperable. Dr. Martin Lesser of the neurocare association in Tamarac, fl chosed to treat me. I hate being on these meds, but they're the only thing giving me relief to get back to functioning as a human being. I guess this facial pain will be with me till death due us part. If you're in need of help and don't know where to turn, email me and I can give you some advice. Allot of doctors out there can be very noncompassionate and I've been through a dozen and that's no lie. Contact me if you need someone to talk to. I don't have TN either. God bless, abbie taylor cunha Name: Irene I am an American 52 yr old woman living in Norway. My pain started 9 months ago when I felt an acute toothache feeling on the left side of my face after drinking or eating hot or cold foods, going for a walk in the cool Norwegian weather or taking a warm shower. About ten minutes after I had done these things I got the "attack" which is excruciating to say the least. Have been to dentist and doctor and read up on TN through the internet and we concluded that I have TN. I am a fan of the Alternative style of living and I meditate everyday for about an hour and take care of myself by not being a part of stressful situations, thinking positive and trying to get my basic 4 diet and exercise. I refuse to start on medicines. My face felt like I had a dried out mud pack on but that has gone away and my "attacks" have gone down from twice a day to twice a week. Now the cool weather is arriving in Norway and I have to get a wool mask-skarf made so I can get out to get in my daily walk - I wonder how this winter will be for me. Anyone have any ideas on masks, skarfs and also more to tell about Alternative ways of life for a TN sufferer? Name: Lorre Name: Karen Hi, I am 53 yrs. old, I have had tn for 10 yrs. Had MVD. in 1992, worked for 18 months back came the pain. GKRS it did not do a thing. Now I had to increased meds to an uncomfortable level. Sound like anyone you know ? My question to you is about my insurance company. They do not want to pay in net work benefits for a Neurologist that can help me that is out of state because they feel that a neurologist in my rural area can help me. I know this is not the so because I have contacted them and they say so. Except one... He feels doing a nerve block will cure me ? What is your opinion on nerve blocks and getting the insurance to pay. sincerely, Please Help, Name: "Susie J" I was diagnosed in Feb. with TN and the V1 and V2 branches are affected. My pain is mainly in my rt. eye and along my rt. nose. I was pretty stable on the tripleptal (not pain free0 but was having muscle spasms in the morning so the trileptal was cut down and baclofen added. My days are not stable. Mornings are the worse, when I wake up (anytime after 5am)I have muscle spasms and shocks. The muscle spasms are better on the baclofen but the shocks were better controlled with the higher dose of trileptal. So, my med regime is in question. My evenings are getting worse and the shocks more frequent and lasting longer - about the time my medication is due. The baclofen doesn't seem to help. Have I had a long enough period to evaluate medication or should I consider my surgery options now. I have read that the earlier the better. I am 64 years old. I believe we are such a minority that most neurologists have little experience with this malady - at least in my area. This situation is pretty surreal since I can't remember the last aspirin I took and now I am focused all day on taking pills and I fall asleep if I sit down. I read letters from TN patients and they are all different. Anybody out there like me??? Susie Name: Kelly-ann The beginning was 5 years ago I don't know how I havn't ended it all for good, I still feel suicidal at times I had a wisdom tooth removed and it numbed my face for three months...and them wam, headaches and this awful pain in my left jaw, the nerve pain. It was horrible, I was told I had a maloclusive jaw and neuralgia, given a brace to straighten my teeth (lots more agony) and anti-depressants after I told my consultant that i was goinf to kill myself if he didn't do something to help me. Loads of drugs didn't work and he said "there is nothing that can be done for you". I found another consultant who gave me a splint and TRA's (only Carbemazepine really helped but gave me intolerable headaches). I now take oxcarbemazepine and the side effects are subsiding a bit (headaches). The splint has helped with the headaches but the nerve pain is still there, and i am not looking forward to the winter where it gets worse. I am determined to find a cure, i have been told by a neurosurgeon that it is not even atypical trigeminal neuralgia, it is atypical facial pain, however, this is subjective and i want a cure, i think my surgical options are either orthognathic surgery to correct the alignment which may help with the nerve pain, or any surgery that is given for TN ( I know surgery is not very successful with ATN) Does anyone know of anyone, anything that may help me, surely someone must have had these two conditions at the same time???????? oh yes and the nerve pain goes into my teeth and into the bones in my jaw please help me Name: Melissa I was just diagnosed with Trigeminal Neuralgia yesterday. I have been having attacks since last week. I was not sure where to turn to - the dentist or the Dr. I went to the dentist, no problems with teeth. Went to the Dr., who though it might be TN, then referred me to a neurologist. I was having over 100 atacks per day for 5 days, couldn't eat, was afraid to move my mouth, afraid to touch my face, was afraid to talk. The most frustrating thing was not being able to find out what triggered the attacks. I was lucky to get into a Neurologist the next day, who knew right off the bat what was wrong. She put me on Trileptal and told me I should get immediate relief. I took one and the attacks started to slow down. By the evening I thought that they were gone! I thought to soon, and one came on...I cried. I didn't think it was ever going to go away. I had a few more during the night, when I woke up I didn't have any. I have only had 2 today. I am still afraid to touch my face, or even brush my teeth. I have an MRI next week to see if anything is going on. From reading your stories, I am afraid the pain is going to start coming back, and I don't know if I can deal with that. I don't like the effects of the Tripletal, it makes me very dizzy, extremely tired, my joints hurt and cannot think straight. I am a single parent of 3 children. Name: Linda I have suffered off and on for the last 8 years with TN. At first dentist extracted 2 teeth which were perfectly sound then suggested gum shield to be used whilst sleeping. Nothing worked and he told me he could do no more! Went to doctor and he advised me to return to dentist. Back to dentist then back to doctors. At last saw a consultant who thought it might be part of a root left in my jaw when a tooth was extracted. All this time in extreme pain and as I worked in a call centre using a headset all day was in agony. Went to hospital and had root removed under local anaesthetic by the surgeon drilling into my jaw. The only relief was the numbness from the anaesthetic. At last prescribed Tegretol which gave immediate relief but pain eventually returned and I had some side effects - lethargy etc. Then prescribed Gabapentin and after a few months pain disappeared only to return after a few months. I now seem to have a few months free of pain and then it returns for no apparent reason. I still see the consultant periodically and I asked him a few weeeks ago if there was any new medication to try as the pain had returned and gabapentin was not working. He has now prescribed Pregabalin (Lyrica) 75mg twice a day and EUREKA it has worked. Keeping my fingers crossed!!! Name: elaine I've suffered from Trigeminal Neuralgia for over 30 years since my early twenties. Sometimes the pain has been so bad that I've spent all night sitting up unable to get my head down onto a pillow. Tegretol has been some help but makes me whoozy and groggy. Alexander Technique has been good to some extent too as I've always thought there might be a link with posture. I really think I might have found a "cure" that might really work this time. I've had flat feet since being a young child. The physiotherapist I saw a couple of years ago to sort out knee damage following skiing had me wear special insoles in my shoes. I now notice that if I don't wear them the TN returns. If I wear them I am free from the TN. Obviously this might just be a coincidence but it makes very simple sense to me. The physio made the very obvious connection between my flat feet and subsequent strain on the knees and back. I've always noticed that my back "goes to pieces" prior to a TN bout, so I really think this could be the answer for me. I wish I had made the connection years ago. Name: Kristin i am 19 years old and almost one year ago to the day i was hanging out at a friends house with a large group of people, one of the kids there was very drunk and thought it would be funny to pick me up and put me over his shoulders. being as drunk as he was he lost his balance and ended up dropping me on my head onto a cement tiled floor. i had concussion and woke up to find everyone hovering over me asking if i was ok. i popped right back up only feeling throbbing pain on the left side of my head near my temple. for the next month i suffered dizzy attacks that would come every few days, and i would sometimes get bad headaches. i went to europe and one day i got a dizzy attack that didnt end up going away for about two months. that was the beginning of my symptoms - it went from being dizzy all the time, to feeling numbness in my arms and legs, to having constant migraines, and then i was diagnosed with trigeminal neuralgia. i would be walking down the street and it would feel like lightning just striked my temple. i was so scared it was something in my brain so i made an appointment with a neurologist near my college and before i even saw him i read a pamphlet about the condition and went into the appointment basically knowing what my problem was... and i was right. that was about 10 months ago and i am still strongly dependent on my medication to help ease the pain - i am taking neurontin, or gabapentin (same thing im pretty sure), so basically, i am pretty much positive it was brought upon the fact that this drunk idiot decided to pick me up and drop me on my head, and the saddest part was the next morning when i came limping up to him and telling him what he did he claimed he didnt remember and he would believe me... he only believed me when all my other friends had to tell him what happened. Name: Sandy Have had Trigeminal Neuralgia for 5 1/2 years now. Unfortunately I am one of the unlucky ones that has had bouts with this at intervals as this conditions seems to do with most people. I am and have been in pain this time for a little over a month. Talking, eating, brushing teeth, cool air, just a slight touch on the right side of my face brings me out of my chair screaming....this is the worst thing that I've had to deal with in my entire life. The electrical shock that comes through my face is unbearable, keeps me in a very nervous state at all times not knowing when another "jolt" will occur, plus the depression. I take Tegretol 200 mg. and have taken 1400 mg. per day for six months without any relief. It finally sent away for several months, but then without notice, "pow", it's back. My friend had TN and had a dream showing a message on a billboard saying to take old fashion BC Powder (powder form, not pills). Her husband immediately went to the 24 hour drug store and bought the BC Powder for her. She took it and was without pain in about 20 minutes. When back to her doctor, he asked her how her pain was. She said that she didn't have any pain. He wanted to know what she had done to relieve the pain....she told him about the BC. Believe it or not, his comment was, "that doesn't surprice me". She was furious. He had given her medication costing $10 per pill. Apparently according to him, BC has an ingredient that does help TN. I can't say that it will help everyone, but it's worth a try. I take vitamin B-12 and Magnesium which was recommended by the local health food store. With the severe pain that I'm constantly in, I'll try anything. The pain does seem to subside after taking the BC Powder but it comes back. Just a little relief does wonders. I'm considering having surgery. My doctor does not like to do the surgery....I go back to him on August 28 so will see what he says about going on with the surgery then. I just can't go on living with this constant pain. Cleansing my face, putting on my make-up, brushing my teeth, talking, eating....all these things are taken for granite by others but is a painful chore each and every day for me and others with TN. People actually think you're "faking" because you look perfectly healthy. Don't know if any of this info will help anyone, but it's worth a try. Good Luck! Name:
"mystery tale" i am a 14 year old female and thuis horrible nightmare started May 18,2004. this was the day i got my braces put on. that night my face started swelling very little. 2 months went by, now it is the night of July 15, 2004. i am sitting in the middle of the bed crying. my face is hug and very painful. nothing can touch my face not even a strand of hair. My mother and grandmother take me to my doctor at the University of Virginia (UVA). as soon as he walks in he tells me i look like a monster her also thought he had the wrong room. hours later i was admitted in the main hospital. they started me on a few pain medications and mild steriods. after bout 3 days these meds. werent working. the doctors had called multiple doctors from other departments in on my case. my the end of the week i was in so much pain that the doctors had me on 10 different narcotics and a moraphine pump. my this time they told my momther that i was considered a legal drug addicts. after a month of the main hospital i was transfered to the childrens rehab called the Kulgy House (KCRC). i was there for about 2 or 3 more weeks with no improvement. there was nothing more that the doctors could do so they sent me home with all this medication. i didnt get any better until December or 2004. once again the second week on December i was back at UVA. but this time the doctors thought that i was going to die and i was ready to die. i had made peace and couldnt stand the pain any longer. i was there until Janurary of 2005. with no progress. i came home in the middle of the month. by this time i had to withdraw from the private school i was going to and had to become home schooled. it is now 7/25/05 and i am completely better right now. but the thing about this condition is that it does come back at anytime and each time in worse. any episode can become permanent. so please stay encouraged and God Bless. Name: Missy My name is Kathy. Of course the e-mail address is that of a family member. Please don't be confused by the names. I first want to say how grateful I feel to have found another living person who can actually say "yes, I know what it feels like". I am not able to work anymore, it has been two years. My right hand is numb most of the time and it just became impossible for me to perform my duties as a legal secretary/power typist. So, now I am not only in constant pain, I am immobilized by fear. "Fear" I could say some very bad things about that word. Again, I am like a kid in a candy store to have found someone to talk to. Please excuse my rambling. I have had all of this pain bottled up inside of me for 7 fricking years. I will be 50 years old July 29th. I have held a full time job since I was 14, that is until 2 years ago. I have been divorced for 16 years and have two glorious sons. Most assuredly sent from God especially for me. If anyone had told me at any point that I would be where I am today, I would have fought. I fought to learn a skill after being married and divorced with a child by age 19. I sucked it up and said let's go. From that moment on I was proud and determined to keep a smile on my face and my head held high. One of the most painfull aspects to all of this is my boys. They have always been so proud of me and my courage to keep going. My oldest, who is 32, said to me just a few years back that he knew I would always be able to get a job even if physical inabilities kept me from performing what I knew. For that he was very proud. I hate for them to be worried about me now in the way they are. They have never seen me depressed for longer than the time PMS lasts. I don't know if they realize it, but I have given up. I am so tired and now have no idea what the future has in store for me. Joey, my 32 year old, said to me just 2 weeks ago "Mama, I know you are tired and the struggle is hard, just don't give up. Things will get better, I promise". Spoken like the good son he is. Sean, my 22 year old, is equally caring, but does not carry the burden like Joey. If Sean is concerned about me he will drive over to check on me. Today, things got better. I found you guys. I'm sure you have all experienced the same financial burden of the Neurontin as I, although I am now on a help program. The stress involved in trying to explain to someone why I would rather die than live with no medication, even if it did cost $500 per month for a number of years. I can live with joint pain caused by reumatic fever ( don't think that is spelled correctly and I don't even care). Never thought I would say that. I always wanted my own grocery list with correct spelling. As you all know, this is so different. If I had to describe right now my symptoms this would be the list: Imagine your finger held inside a wall socket and the electricity shooting straight into the right side of my face; a million tiny bugs swarming at once and you can't get them off; no skin and cold are causing super sensitive pain; biting the inside of my mouth so hard over and over until it looks like hamburger meat and last but not least, biting all the way through the tip or right side of my tongue. I have to go now, but hope to hear from someone. Kathy Name: Sophie I've been there and done that is usually the conversation with consultants. I've had 11 craniel/facial surgeries in 8 years and now live in horrendous, full time pain, the bonus of AD (the all time nightmare)as well as dental pain. I've had 3 failed MVD's including 2 with the famous Dr. Peter Jannetta. I've been in two different pain clinics a year each. I've had over 50 injuections in my head, face, mouth etc. I've had enough counseling to get my own degree. I'm running out of medication experiments and I'm just too far gone for help. My pain is 24/7 and ranges from a 5 -10 daily. NOTHING, not even the strongest pain meds help ease the pain. My teeth have electrical shocks in them that have actually thrown me off the bed during the night. There is just nothing left for them to try and each surgery, according to the doctors, is less successful that the prior. Each MVD was farther up my head and each found more entwinments. The AD is a killer pain and can't be understood by anyone who has not experienced it. It's like standing in a pool of water and sticking your tongue into a socket. The surface is so numb that I have had 3 3rd degree burns on my face from a curling iron, me not paying attention, until it was smoking and turning black. Yet the severe pain is so deep it's electrical in the nerve. Nothing topical or internal phases it and so it is a beast to be burdened with. I would love to write with others like me. Anyone who might have a suggestion. Or just someone who wants to make an internet friend to chat with. I lost my 25 years banking job over this and have been suffering for over 15 years now. I was forced on disability for about 9 years now. I've lost life as I knew it, my body is shot, my weight is feeding tube size, my short term memory has been affected from the surgeries, my depression is an ongoing mess where I will probably never be able to be off from an antidepressent. I'm in the cycle of pain causes depression. Depression increases the pain and so on goes the wheel I can't get off from. I am fortunate thought. I inherited free and clear a sense of humor and a high pain tolerance. Living with this is what we make of it and I refuse to let it consume me any more than I can control. Sophie Name: Amy This is an update to a previous story I left several years ago. My name then was Amy Lilly. Since my initial combat with TN (2001) I have visited a dentist for a regular visit to fill a cavity. In the process I was sure to tell the dentist I wanted no needles of novacaine in my face since I was convinced that is what started my problem. After he took a few xrays he found that the issue had nothing to do with TN. There was a stablizing pin placed in my tooth several years prior to provide support for a weak tooth, and that pin had shifted and was sitting right on the nerve of my tooth. In addition the filling had cracked and leaked, causing infection. Once a root canal was done on that tooth to remove the pin and all decay, my problems were solved. Unfortunately all dentists and specialists before did not pick up on this problem, I have been pain free for almost five years. Please be sure to visit a dentist and have extensive xrays taken in order to rule out any problems with cracked or infected teeth. I wish you all the best in curing your disease. Name:
"wags4u" In 1981 I recived a tetanus shot and had a severe reaction and nearly died. After the Benadryl, adrenline and cortasone the hives disappeared, my breathing returned to normal so did my tight chest and swollen throat. But I had side affects that the doctor said would last 1 to 2 months. Which were headaches,neck,shoulder and joint aches all on my right side. He put me on Indocin, 20 tylenol #3 and muscle relaxants. 1 month later with no improvements I went to have some dental work done. While i was having my third molar extracted there was trauma to my tmj it took them ! year to find thus out Four years later I had a teflon tmj implant that fragmented and caused giant cell reaction and bone loss also four more surgerys with rib graft Today I am still a mess and on strong pain medicine Name: kelly This all started about 3 weeks ago, I was on our houseboat, and my teeth started hurting not lasting along time, I didn't pay much attention to the matter, and last Saturday night in the middle of the night about 2 am I jumped up out of bed and thought my world was coming to a end , the pain was something that didn't stop and was unbearable, I said to my husband of 2 months, there is something wrong, I'm the strong one in the family so there is nothing ever the wrong with me, I told him I can't stand the pain he said oh , it's your tooth go back to bed, I went into the living room of our boat, and clapped, with the pain, I got up and got the car keys and drive to my house that is only a few mins away, first thing I did was look for tylenol I'm not a med person, so I don't have alot of this stuff around and got tooth gel and put it on my teeth, and then put cool clothes on my face, time went on and I was so sleepy with the pain I fell back to sleep, my husband called me and said what are you doing at home , if that where you are, I said silly that's where you called me, I feel better now so I went back to our boat, it is now father's day and had alot of friends and family to the boat for a cookout, during the day everyone kept on saying are you ok, your eyes and lip look funny , I said I feel sleepy that's all, my sister got really concerned, and said you go and get checked out I told her I would in a few days, if I didn't feel better, not the one to go to the doctor's for nothing, well it was less then one hour after everyone left, I lose it, I couldn't see, speak or anything, I passed out with the pain, and my husband and stepdaughter that is a nurse called 911 , it was min's for the ambulance arrived, I had high high blood pressure to the point they didn't move the ambulance for awhile, well here we go to the hospital, blood work, cat scan, and then they admitted me for 4 days, now MRI and more blood work and then I got my verdit that I had trigeminal Neuralgia, well never heard of it , but now I'm on med's and going to see a neuro on tuesday, let you know how things work out....kel Name: Vince Hi, It's sad to see I'm not alone, because I won't wish this on anyone. One thing I hae noticed from reading your stories is that there isn't too much mention on the triggers of TN. Mine is simple- cold air. When I a cold breeze or air conditioning is on, I slowly notice the pain start. Usually, it's just a twing, but if I ignore it and grows day by day. So bad sometimes that I double over and can't move, because I'll be sick. That doesn't happen anymore, because I know what I have and take steps to prevent it. I live in a cold climate, but it get the TN headaches more in the summer, because if I even sweat a tiny bit, as soon as I get into AC I can feel the sensitivity begin. (I feel it right now in fact.) Tegratol and heat pad have been the most help. I take 1/2 of a 100 mg tablet and then half that the following day. If it is real bad, I'll take 100mg and 25mg the folowing day. I was also told about radio theropy, but have not looked into this yet. Hope this helps someone. Vince Name: Kathy I have a new problem,I have had it since 5/19/05 and it keeps changing. I wanted to know if anyone here knows about it-or had someone suffering like this. It is one my left side,where as TN has always been right side (also Migraines-when I had them) and other pain. I also have TMJ-TMD. The thing I have now keeps changing,last night scared me. I keep having a pain in my scalp about 1/2 way down (left) and it has felt like a ice pick being driven through to my brain. Last night it was about the size of a silver $ and "fingers" down to forehead and down to nape of neck (where the original pain started-and still hurts) It hurts-tingles-feels numb-and then "cold",not to the touch,that is just how it feels. My Dr. (of course isn't in this week) I have been to 2 times in the past 4 weeks. At first I thought it was because I stopped taking Baclofen(with Dr's. instrustions) and got horrible roaring in my ears (I have tinnitis all the time with inner ear problems) but,this was roaring. It stopped about 4 days after I started taking Baclofen 6 a day,not 3 a day. But the Pain has changed and still here. I also called my neurogist ,nurses and asked if this was TN or nerve pain also. They called back with a prescription (that I said no to as it would interfer with my fluid in my ear- ni one know about inner ear,so they didn't believe me) anyway I asked again 2 times if it was nurves-finally they said the neuroligist said she didn't know what it was-I can't believe she just wanted to give me pills and not find out what is wrong. Sound familar to anyone?? Please excuss the spelling I'm in a lot of pain.-- I,of course,didn't know what was wrong with me. My regular Dr. (after several visits) sent me to the neurolgy dept. after 2 drs. I finaly felt o.k.about one and she has been trying to help me for about 6 or more years now(how time flys!). Any way I have tried a lot of medicine and failed the 3 I'm on now seem o.k.,but they are costing so much,I wanted to stop some of them. So far,not a good idea,got into more trouble. I think of all the things the Botox has been the best. The problem is that my body knows when it needs the "fix" and I get more TN problems. I hate that no one has come up with medicine for TN--we have to take medicines made for so many other things--no wonder some of them don't work. I don't know if any thing I've written will help anyone..I am just having a new problem,that I wrote about in comments and I need your help (can't seem to get medical help now) and see if anyone out there knows what it could be. I am glad for this site and know that we are not alone!! Name: Sunshyn Hi, my name is Sunshyn and I am 37 yrs old. My Husband and I have been married now for 20 yrs. We also have a son whom is now 12 yrs old! This is now June 9th 2005. I can not remember what day this month it was, but I woke up one morning, and I don't know why, but my right jaw was hurting me. Well, it wasn't really a hurt...more like a bad tooth ache, except without the teeth! (Yes I have dentures) Well, I didn't think anything about it. I just figured that it would go away just as fast as it came on. Two weeks went by and I was still hurting. At this time, it hurt me to open and close my mouth, swallow my drink, talk, laugh, yell, yawn, basically anything I did, it hurt no matter what. By this time I had also had about two or three sharp stabbing, or shooting pains that came and went,,never had any more....no big deal , right? Well, I figured that seeing how it was my jaw and that my jaw was part of my mouth, that I would go to the Dentist. So I made me an appointment. Went into the room and told him everything that was going on. I even told him that it was NOT my Dentures and it was NOT my gums that was hurting me. Wel, never the less I took my Dentures out and he started putting his fingers in my mouth feeling around. Finally he put his finger in one certain place and pushed in real hard and I jumped!...After he was done with his fingers in my mouth, I kept showing him where on the outside of my jaw where about it hurt..he put his finger on my jaw up high and I had turned my head to the left, and all of a sudden I jerked my head over to the right and the side of my face hit his finger! Man did I jump!! All this time in the room he never did take any x-rays of my mouth or jaw! Instead he tells me to go home, take the muscle relaxer that he was ging to give me and take some Ibprophen for pain...he also wanted me to put a warm compress on my face over my jaw. He also told me that if I wasn't doing any beter within two or three days to let him know and he would reer me over to an oral surgeon. Oh, he also told me that he thought that it was in my joint area! While I was in the room, he also picked up my OLD x-rays and was looking at them....Right!!! Like my OLD x-rays are going to tell him anything!!! Well, I came home and did as he told me to do. Nothing worked! I called them and I asked them if they would please let me have something for the pain...Do you know he wouldn't give me anything??? Well, needless to say I got more than just a little P'od..and I hung up on them! I then called my family Dr and told them what all was going on with me. They set it up for me to have x-rays done. The day came, I went in and had my x-rays done..then that afternoon I went to my Dr to find out the results etc...Ok, the Dr comes in the room and we have a long talk. She examines my face throast etc.. real good and found nothing wrong. She than sat down and began asking me a bunch of questions! (At least she didnt do it with her fingers in my mouth!!!) my answer to almost all of her questions was a simple "no" You know, questions like..do you have any numbness in your jaw etc.... I told her about it hurting me any time I did anything with my mouth at all, including talking etc.... She could tell that I was really hurting! She thought at first that it was tmj, so she gave me a heavy duty muscle relaxer and some percocet for the pain. I can home and started taking my medicine and everything was fine at first...then I woke up one night and found that the percocet wasn't helping my pain any more....I also noticed that it started giving me really bad headaches, so I was told to stop them. Well by this time I was now having really bad sharp stabbing shooting like pains in my right jaw and it felt like it was going into my ear and they kept coming and going..then it got even worse and the aching that felt like a tooth ache decided it would join it also..and they was steady... that never did go away! Well the Dr then put me on Valium & Tegretol and they said it would help with the pain. Well I talked to the pharmacy and they told me that the Tegretol wouldn't do a thing at all for my pain!! Now I am really upset to say the least!! I called the Dr back and I told them what the pharmacy had told me! Out of the blue I broke into tears and I told them that I had been hurting for two weeks straight and that I was really tired of it and that I couldn't tqke this no more and that I HAD to have something for the pain!!! She then prescribed Darvocet for the pain. Well, the very first night of me taking the meds all of a sudden my sharp pains and aching stopped completely!!! Now I know it wasn't the meds cause they hadn't had enough time to get into my system...so I am thinking that it is just my jaw....but... I'm STILL hurting!!!! Still, opening and closing my mouth, talking, eating, laughing, etc.... all of it is still there..except for this is a hurt that I can't really explain! It hurts, but its not the sharp shooting stabbing pains or the aching like I was having before...well Hubby and me have still been doing some reading and looking on the net, and I can't remember just where, but some where we saw where it said that sometimes if you have a tumor , that the tumor can cause this...also we read that even if you dont have a tumor and it just starts up on its own that you could have MS and not even know anything about it! So I had a talk with my Dr and I told her that I was concerned about these things and that I wanted an MRI done on me! I am now scheduled to go in on the 21st at 11:00 that morning and then at 11:45 I am to have my MRI....I do have one question though... Why do I have to wait 45 minutes to have the MRI????? Any ways....the past two morning I have found myself waking up at around 4:00 in the mornings hurting and finding myself with my hand up over my jaw holding it... I must have been moaning or something last night cause my Husband woke me up asking me what was wrong and if I was alright...when I woke up my hand was on the side of my face and I told him that I was hurting, and he told me to go take myself something for it, and so I did! Well, that's all of it so far... except that it has almost been a month now that I have been hurting!! Any ways... if anyone would like to talk to me, please feel free to write to me..I'll be happy to reply to you!! With prayers and Love & Hugs to all of you, Sunshyn Name: "relieved" Just an FYI - My husband was diagnosed with Trigeminal Neuralgia (TN) and was taking Neuronton for 2 years when he considered getting the nerve in his face cut. He was also put on anti-depressants during this time to ward off the depression from the Neuronton. I convinced him to see the dentist one more time. While he did not have a bad tooth, plaque had gotten down below the gum line and was deteriorating the jaw bone. He had the tooth extracted and it has not bothered him since. While I do not believe it will be this simple for most of you, just make sure you explore your pain with your dentist before taking all the meds or having surgery for TN. It was a difficult 2 years that could have been avoided had someone found this in the first place - he never had TN to start with. Name: Melanie I am not exactly sure what my mom has, but she has been in pain for about 4 years now. She got dental implants, and it went terribly wrong. The doctor made mistakes, which left her in pain. She has tried many things, from drugs to the Gamma Knife treatment. Nothing has worked. While my mom had not taken a narcotic in her life before this, now she almost depends on them to help with the pain. She has lost about 50 pounds, weighs about 110 now. She can not eat, and stress ignites the pain. I pray every day that we can find a cure for her pain. If there is anybody out there that thinks they may be able to help, PLEASE let me know. I love my mom very much, and this pain is killing her.
Name: William Email: kcimmins@Aol.com I have been suffering with terrible pain in my gum/face for the past twelve years. It all started when i cracked my front right tooth whilst chewing a toffee. The pain at the time was bearable and kept coming and going but as time went on the pain started to get worse and last for longer periods of time. It always felt as if the nerve in the front of my face was trapped and if i wiggled my top lip i could relieve the pain and get rid of the trapped sensation. Now though the pain is constant and some days are worse than others, in a bid to try and relieve the pain i had my front tooth removed but still nothing happened. There was also some swelling on the back of my gum which the dentist cut away and put me into worse pain. I have had many pills such as tegretol and even had pain blockers and numbing injections but nothing can get rid of the pain. Although my face and gum feel numb the pain is still there and i have a twitching and pulling sensation in my face all thw while. Some days i can relax it down but others are pure hell and at present i cant find anyone who knows what it is. Some dentists have said trigeminal neuralgia others have said its a trapped nerve but no-one has given me a sloution. I wonder if anyone out there knows what it could be or has had similar symptons. Let me know by e-mailing me if anyone knows and i sympathise with all of you here as the pain of these diseases is terrible and cruel. Name: Knierke How are you all? I just read all your stories on the TN web page and know what this horrible condition does to you. My name is Knierke and I live in Brisbane, Australia. I am originally from The Netherlands but decided to emigrate with my hubby, who is a New Zealander to work and live here in Oz. I have always worked in psychiatry but retired a year ago. I am diagnosed with TN 6 months ago after having painful episodes in my right jaw for almost 2 years. In my case it is the third nerve that's doing the damage and it affects mainly my lower jaw. The pain was awfull but I could live with it and when my doctor told me to go on the tegretol, I refused. In stead I started to see an accupuncturist who was very helpful and it relieved some of the the pain. Some 3 months ago the pain became worse and worse. Also it haunted me at night and still does. I have to take sleeping tablets to get a few hours of decent sleep. I saw my neurologist 2 weeks ago, she talked me into taking neurontin. At first I was very reluctant and asked her whether I could see a neuro-chirurgeon instead. She said that when the medication failed it was an option. I thought, well when I take the neurontin at least I have another option when it does not help. I took it for 3 days and instead of helping me it exaggerated my pain. Well, in short, I will see an neuro-surgeon in June and maybe there is some light at the end of the tunnel. I read a lot on this web-site and I see different statements about having surgery. But I am at my wits end and do not want to be in pain all the time. I read a comment from one who applied zostrix cream and had a fantastic result. Do you know whether anybody else has experience with it? At the moment I take magnesium, Vit B-12, calcium, Q10, multi-vitamins and see the accupuncturist. Maybe you might have some other suggestions? I will keep you posted about my experiences. I know there is a conference in Sydney about TN in August. Hopefully something good will come out of that. Hang in there!!!!! Bye for now..... Knierke Name: "vicks" I must have had Trigeminal Neuralgia (TN) since I was 22 and now I'm 33. I kept having these shooting, stabbing, spearing facial pains in my left cheek, the feeling like I was being stabbed with a very large knife hooked up to the mains electric. I looked in the mirror there was nothing on my face, I looked normal but the pain was so excruciating , it hit suddenly like a jolt of lightening to the face, again and again the pain stabs and then its gone., it only lasted for 10-30 seconds but it felt much longer. I just thought it was one of those things at first, like pins and needles or something, you knew it was going to happen but you did not know when, it was like waiting to be pushed off an edge of a cliff. I thought it would pass. It didn’t it continued for a very long time sometimes I would have up to 20 attacks a day and some days nothing, you would never know when it was coming it just happened and the pain was unbearable. Cold weather did not help either and I found a trigger point in my mouth just by my gum this would set the pain of at once if touched. I went to the doctor and asked him about these pains, he didn’t know and nor did I so I just put up with it. Then one week I was in serious pain worse than ever I was having about 40 stabbing pains a day and one evening I just felt very strange and suddenly my face felt numb! I looked in the mirror and the left side of my face was drooping and I could not close my left eye, my speech was very slurred. My husband took me straight to the emergency doctor who said I got "Bells Palsy" I had never heard of this. I was put on 8 steroids a day and off work for 2 months with having to have physiotherapy which was not much fun. After 2 months I made a full recovery. I was reading in a medical book all about Bells palsy when the topic on the other page caught my eye, I noticed a paragraph that said "shooting, stabbing pains" I continued to read it and it described my facial pains right down to a tee. This condition was called Trigeminal Neuralgia. It was totally unconnected to Bell’s Palsy. With this new info I went back to the doctors and told him what I had found, he agreed and prescribed me Tegretol (anticonvulsant) I was eventually on 900mg a day. The pain went which was great, but I started to notice I had memory loss I would make a cup of tea and then put the cup in the bin and the teabag in the sink! Crockery and other objects started to disappear and sometimes would reappear in strange place like the fridge or I would have thrown things away, it was the drugs so I went back to the doctors and told him the situation. I then went on Amitriptyline this did not touch the pain so I gave in and went off the meds. Years passed. I could not cope with the memory loss from the drug, and now the pain was increasing and becoming more severe. This condition seemed to be taking over my life, I got turned down form the Police force on medical grounds because of this .I know something had to change. I then (aged 31) went back to the doctors and said I cant take this pain it is getting worse and could he refer me to a neurologist. Several months later I got a date through (February 2003) to see the Neurologist Mr Nester at Hinchingbrooke Hospital. He put me on Trileptal a similar drug to Tegretol but a different chemical structure, he also booked me in for a MRI scan the date came through for September. I had the scan and saw Mr Nester I told him the Trileptal had the same side effects as Tegretol so he said the only solution left was surgery. He forwarded my case to Addenbrookes hospital in Cambridgeshire. I got an appointment for February 2004. I saw Mr Macfarlane the Consultant Neurosurgeon. He explained the options that were available to me 1) Gamma Knife which they do not have long term results of for TN patients.2) Radiofrequency Rhizotomy and 3) a procedure called Microvascular Decompression (MVD). I did not know which procedure to go for, this was my life and I had to weigh up the risks of all 3 procedures, he would contact me in 2 weeks. I had no literature to read so armed with the procedures he gave me I scanned the internet. I found the Trigeminal Neuralgia Association Web Site (www.tna-uk.org.uk) what a marvelous site, so much info, support and help. I found out so much more about this terrible condition, it is described as the worst pain known to man, which I can relate to. Armed with this new information and my husbands support I then decided to go for the MVD. This is considered as major surgery, it is the only procedure that does not attempt to destroy the nerve. Complications may occur these include hearing loss, numbness and dizziness but these are usually short lived. The most serious side effect is a stroke which is very rare, and less than 1% risk of death. This procedure had to me the best results and through the TNA I had met and talked to other sufferers who had this procedure and they had made a full recovery. The operation is carried out using a general anesthetic. The surgeon cuts a small hole in the skull just behind the ear and, using an operating microscope, exposes the Trigeminal Nerve where it enters the brainstem. The surgeon will then search for any blood vessels or veins that may be compressing the nerve and separate the two by inserting Teflon material to protect the nerve. I went in on Sunday 1 August 2004 to Addenbrookes Hospital, the staff were all great. I had a visit from the registrar Mr Wilby, then my surgeon Mr Macfarlane, all due to go ahead on Monday. Monday11:30 I get ready for theatre at this stage I am bricking it, they take me up to theatre at 12.15 they knocked me out pretty quick as I was rather in a state with tears and worry. I Was back on the ward at 5.00pm as I came round three familiar faces came into focus, My Husband Paul, the Registrar and Mr Macfarlane the surgeon. He informed me the operation had gone well, there was a vein compressing my nerve which he removed and 2 blood vessels close by which were moved out of the way and Teflon inserted to protect my nerve, I was so relieved. I noticed was my neck, it was so stiff they have to cut through the muscles in your neck to make the incision a good size for better access and I had the headache from hell. I noticed several machines beeping away at me and I was on a drip. Numerous nurses then asking me every 15 minutes, where I was, who is the prime minister and taking my blood pressure (this was to check my long term and short term memory) I stayed on oxygen the rest of the day and the whole night. Next day I woke up, Every time I moved my neck I got a headache and my neck still hurt .The thing I noticed was no pain in my face, no strange feelings in my face great. Wednesday still no pain. Thursday I was half awake and thought I had a bit of a stabbing in my face then fully woke up and talked myself out of it. One of the nurses wheeled me to the showers, under the shower nice, then bang oh my god this was a really bad face pain! This cant be happening, so there I was in the shower crying my eyes out, not a pretty picture. Got back to my bed said I need to the surgeon. Did not see him till the evening as he was in surgery. I had 9 more attacks in my face they were all very intense and severe. Mr Macfarlane arrived he said it could be due to the swelling I was put on gabapentin (another anticonvulsant drug). Another strange thing my head at the side and all round the back is totally numb, when I sit up in the morning I have to lift my head with me a feeling very much like when you have a injection at the dentists, This is due to them cutting through my nerves. The only other side effect was hearing loss but this was only temporary. After those 9 attacks I never did get anymore. I was discharged on day 7. I had to go back in 6 weeks for a check up. The scar was very neat, disposable stitches were used inside and steri-stripped the outside. I saw the registrar Mr Wilby after 6 weeks and I was weaned off the Gabapentin. I had a follow up with Mr Macfarlane on 4 Jan 05. I have been pain free ever since and drug free, no side effects and a full recovery. I can’t thank Mr Macfarlane the surgeon and his team enough, to take someone’s pain away like that, is amazing, he has given me a pain free life. I hope this story will be an inspiration to any other sufferers of Facial Pain. Have a look at the Trigeminal Neuralgia Associations Web site www.tna-uk.org.uk they were a great help. With them and a fellow sufferer I am helping in setting up a support group for the Cambridgeshire region. Helping fellow sufferers and making Doctors and Dentists more aware about this condition. Name: Kathy I have been diagnosed having Occipital Neuralgia after I was given 10 times the correct dosage of Epinephrine IV by a Medical worker. I have always been active, organized, able to do and handle anything and now don't know from one day/hour to the next how i will feel. We have tried nerve blocks, medicines that make a person so drowsy that you don't know your name or the time of day. Has anyone had any type of treatments or medications that have worked? I have read Bee stings have been used to treat Occipital Neuralgia. Please send me your storys on how Occipital Neuralgia has changed your lives. Name:
"hopeful" I recently was experiencing what many of you described as atypical facial pain -- shooting nerve pain mainly in my right upper and lower jaw, but a little on my left side. Like many, I am under much stress. I had a slight injury to 2 teeth which started things. After reading many peoples postings, I was in so much pain that I borrowed from several people: I used Vitamin E oil to massage everywhere the nerves were panging along my teeth & gums. I irrigated my sinuses with SinoFresh, I took a supplement from Whole Foods (Primal Factor) to fight yeast imbalance, I took 1000mg calcium w/magnesium + vit B complex 3x per day, I stretch my neck back and then rock it from side to side SLOWLY, and I massage the back of my neck and shoulder area. I also am careful to calmly meditate before sleeping and to make sure I'm not holding my jaw tight or grinding my teeth through the night. I also make sure not to curl up in such a way as to mash my jaw into the bed/pillow/my raised shoulder/or blankets. This combination of many things recommended has cut the severity of the pain episodes about 95%. When I start to feel an attack coming on, I put the vit E oil all over my teeth and gums again and it staves off the pain. Just wanted to share, best of luck to all in your personal endeavor to deal with the pain each day. Name: Jennifer I am a 30 year old woman with three small children ages 3 1/2, 2 and 11 months and have just been diagnosed with TN. It started when maybe about 2 weeks ago I woke up in the night with a shocking pain right in the middle of my right cheek. It was a short stabbing type of pain that only happened a few times. I basically dismissed it. Then a few nights ago during the middle of a deep sleep I sat straight up with one of the worst pains I have ever endured. It was in the middle of my cheek and ran down my face. This time it felt like an electrical current was surging through the right side of my face. This jolt lasted about 20 seconds. Once the pain subsided I laid back and felt like I needed to hold my breath for fear of another attack. I was afraid to breath...afraid to move....afraid to feel my face to see if I was all right. I have since had several episodes. I cannot describe this pain...I am sure most of you know what this feels like though. My family doctor has referred me to a neurologist for further testing. I am so glad that I have not had to go through several doctors or some of the treatments that some of you have. But I have to admit I am scared to death of having to be on the medication or having to have a procedure done to alleviate the pain. I don't know how I am going to manage being on the drug as it makes me woozy and tends to knock me out at a low dose. I have three kids at home with me to take care of. I don't know what is worse...the pain... or being scared that I might pass out while at home alone with the kids where something bad might happen to them. I am guessing by some of your testimonies that this is something that doesn't go away. If any of you have any suggestions for me please email me. I am trying to be hopeful about this, but the more I read the more depressed and scared I become. Thanks for any help!! Name: Tamra I have suffered with GN/TN for years. I've been on Neurotin / Tegretol and a variety of other meds for years. For all of you who suffer from any type of neuralgic head / face / mouth pain which is also accompanied by a stuffy or runny nose I'd like to make a suggestion that seems to have helped me (sometimes but not all the time). At the first sign of pain- I hydrate my nasal membranes using a variety of methods such as 0.65% Sodium Chloride (Ocean spray) or Flonase or Nasonex or my head under a towel over a steamy pot or sometimes just standing erect so the head can drain before lying down, or getting up from bed when the pain comes at night and standing erect to allow the head to drain. Keep the nasal membranes as moist as possible, even if you have to put water up your nose by sniffing it off your finger. I would suggest you try each method separately so you can find if any or all work to help control the pain. It seems to have helped back down my pain at times. I'd love to hear if this helps anyone. I know just what a monster this pain can be. Good luck~ Name:
Barky Greetings oh forlorn one. Yes I can see your concern. A history of headaches and now this. I have been 19 years with a non classic migraine. That is to say migraine without aura. My first intro to Migraine was in 1986 . I was hit in the right eye with a blunt object the size of my thumb. Within a week I was in a migraine attack but also had developed a condition called UV ITIS. . Don't ask me. Any way 14 years later at the same time as my divorce /seperation my migraines stopped . I spent 2 blissfull years with very few headaches when an unbelieveable thing happened. Well everybody knows the game that tow truck drivers play once they have your car. You know , possession is 9 /10s of the law. Well this one decided to push his point . I was hit over the head 4 times with a solid steel bar 2 feet long. Well I was knocked stunned. I could hear what was going on but I could not see. Well I spent the night in the hospital . I began having headaches again but they were different. They started in my neck not behind my right eye. So now , what do we have here but 2 types of migraine both atipical and non classic. But both the result of blunt trauma.Well this is year 19 and things are being understood somewhat. I still have much to learn and understand. The most important is how to carry on a life with these complications. It is good to talk I find , to those of similar constraints and burdens.Untill 6 months ago I had no idea what it was. I thought Meniers syndrome because that is what first came up with my google search with my symptoms. Dizzyness . The feeling that the ground was always moving like you were in the hold of a boat like a farrie where you are moving , you know it , but you cannot see it . Well It was somewhat a relief to me that it was not menieres. But he said "Your Dizzyness may never go away" . I said Doc it helps to know that it is a condition with a name.He asked if I had had the Ice pick pains in my temple , in my ear canal , the lightning bolts of pain that blind you with the searing white hot light that is left like the clap of thunder after the arc of neon fire were new . I said yes. He said they are above your ear and not so much in the jaw. I said yes. . He said you have Occipital neuralgia. and Cervicogenic headache. Well relief. I am no longer nutts. Now I can get on to treatment. This is 13 months after the injury. Yes I do agree with his conclusion and have had short term relief with Depo Medrol and accupuncture . Both had similar benifits like a reduction of frequency and severity . I prefer accupuncture and ostiopathy. The later is part of a Physio appt that includes accupuncture and ostiopathic manipulation. I think that its a draw which works best for me with only having to be able to afford the expence. I have lost my business and have had to come to terms with a life in flux. Not knowing if I go back to some sort of work will I be able to handle it. Also comes the question , If it is this bad at 53 yrs whats it going to be like at 70. I have a scence that a person not be too hasty. Oh and incidently. In the last 2 weeks I have been having strobing lights in the periferal vision. AKA Aura. So 19 years inot toh headache mode I now have a real live CLASSIC Migraine. Well I would be happy to respond to any questions. The one thing that I see is that a Trigeminal condition can hav influences in the occipital nerve placement grid and so the reverse. So I think they call that cross talk. I will post this at Questions and answers . Name: sadie Hi my name is sadie and I am 46 I have had my condition since I was 17 but would only bother me now and again, but for the last 3 years I have been plagued with it. I have passed out and ended up in hospital twice and was off work last year for about 17 weeks in all, I think I could be menopausal maybe this is making symptoms worse. Well my symptoms are, facial pain in cheek and nose area, inside feels all congested, I have a fullness feeling in ears especially right side, had them checked out no wax. head at back at base fells really heavy and dull ache, teeth sometimes are pained as well, I feel a heaviness down my right arm and have pins and needles in hands and feet. All in all I am a walking miracle. Really could end it all some days as I feel so ill. Have been to ENT surgeons they say nothing wrong with sinuses although for years doctors gave me antibiotics thinking it was. They washed there hands of me and said see an neurologist so I went private last year but he didn't think it was anything he could help with. Have had MRI's and CAT scans done of my sinus area nothing showed up have had camera down nose nothing showed. So my sinuses are ruled out even although I think my full face and ears are full of infection. But went to doctors last week again and he said it was sinus and gave me more antibiotics which didn't help. The area round my eye is now puffed up in the mornings and this makes me look terrible, My family life suffers as I can't pre book anything as I never now how I will feel that day. I don't know if this is the same as us but it sounds quite similar. I do appreciate how you feel though. I just would wven like someone to tell me what this is. Not knowing can be sometimes worse than knowing. I went to a person called Jan Devries, in Troon in Scotland and he is a well known Alternative Practitioner, he said I had TMJ and he did some Manipulation and this helped for a while but then it cam back again I attended him for a year and spent loads of money on this, but still no cure. Doctors don't think it is TMJ as I can open my mouth fully with no pain. So where do I go from here, I don't no my head is going round and round. Name: Texas Rose To recap, after many years of very painful TN (12-15 years when counting all misdiagnoses, etc.) medications (tegretol, dilantin, all others) had failed me over and over and I finally had a percutaneous glycerol injection to the right trigeminal nerve and gasserian ganglion in 1998, which provided significant pain relief for almost 3 years. When the effects wore off (pain returned as the numbness from the procedure gradually diminished)from that procedure, my neurologist prescribed Neurontin and then the newer anti-seizure medications (Keppra, etc.), which had fewer side effects but also eventually failed me over time. Please understand that when a high dosage of a medication "fails", it can be a crisis event of over a week of very bad pain. Since you must "come down" off these very potent drugs gradually first, then gradually building up the newest drug, that time period in-between can be excruciatingly painful until the new med finally starts helping. With the anti-seizure drugs, you cannot withdraw the ineffective drug dosage too quickly or you may actually have a seizure, even though you are taking the drug "off label". (I had learned that subsequent glycerol injections were seldom as effective as the first one.) At that time, I asked for and received a referral for surgery. I visited 4 neurosurgeons in 3 differnet cities and had 3 different procedures recommended to me because of my long-standing history: radiofrequency rhizotomy, MVD and gamma knife. During this period of time, I started going to a local TNA support group meeting, which was very helpful and provided a wealth of information that helped me sort out the decisions that I had to make for what was the next step for me. In June 2004 an Assistant Prof of Neurological Surgery at UT Southwestern Medical School in Dallas performed a suboccipital craniectomy with (a)MVD of the 5th cranial nerve, and (b) micro-surgical rhizotomy of the trigeminal nerve root. The rhizotomy is a part of this surgeon's surgical approach, and in addition a high-contrast MRI and his visual exam of my trigeminal nerve and surrounding area did not indicate any veins or arteries causing compression or damage to the nerve. I cannot say enough positive things about the surgeon, the clinical nurse and medical team and the medical care at Southwestern Medical School and Zale-Lipshy Hospital. Although the post-op visits were not convenient since I live approx 400 miles away, I also was able to consult by telephone for any questions and was carefully weaned off the medications that I was taking pre-surgery over a period of several months. I recommend that you do as much research looking for the correct approach for you (including type of surgery if surgery is your choice). Then, I also recommend that when lookig for a surgeon, you choose one who has done many of the type of surgery you are going to have and has an established surgical team. Finally, check with the Board of Medical Examiners in your state to determine whether there have been any complaints or sanctions brought against your potential surgeon, and check out the website in your state to check the mortality rates in the hospitals where you might be hospitalized, especially for a similar type of surgery (or at least for craniotomies). But especially study, study,study about TN and the possible treatments. Looking back at the progression of my illness, I took a very conservative approach, but finally reached the point where I felt that I must try surgery. No one will be more diligent than you yourself, so be sure that your decisions are informed ones. Then, in addition to research, pray and place your trust in God. I would like to offer the following website for good visuals about many aspects of TN: http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/index.html It is not the most detailed as far as medical information and comprehensive detail, but the visuals are VERY helpful, especial to explain you illness to family members. I wish everyone who has written "my story" the very best as you travel the trail that I have travelled. I hope that some of this is helpful: try the website !! Name: steve about 4 weeks ago i woke up with the worst pain i have ever felt in my head. it was above my left temple and radiated through my left eye and across my left temple. i have had headaches all my life including a few migrains. nothing ive felt in the past compaired to this pain. i had been having problems with a tooth on my left side and figured that was it or a reaction to the pain killers i had been taking (vicodine- asperine with caffine-advil) but when the pain came back the next night and every night for the last 3 weeks i saw a doctor. at this point he has suggested tn, allthough my pain is more in my optic region than in my jaw. after reading about this online i fear that this is my problem. i am scheduled for the basic tests (mri brain scan ect.) to rule out tumors. but in the meantime i am forced to rely on vicodine as this happens to me every night between the hours of 7 and 10 and isnt short bursts of pain but constant pain untill the vicodine kicks in (if it even does) as a cronic headache sufferer this is a death sentence for me. i cant think of a worse non fatal problem that i could have. i am a beginner any suggestions or info would be helpfull. thank you Name:
Kelly Hi. I am a 26 year old at home mom. I have 2 children ages 3 and 4. I am trying to write a book but it is hard during an attack from the pain and the pain killers. Let me start from the beginning. Feburary 18, 2005 I started having a bad toothache that went away with 2000 mg of Tylenol. March 10, 2005 I was still having the toothache but a migrain started. March 24th, I finally went to the doctor because the pain was unbearable and I was crying most of the day from the pain and Tylenol and my husband's Vicodin (500mg) didn't work. I told the doc my symptoms of burning sensations in my teeth, jaw pain, a migrain that wouldn't go away that stayed on the left side of my head and in my eye socket. He told me about TN. He set me up with an MRI to see what was causing it. March 28th I had the MRI. On the 29th, the doc called me back with the results. I had a rare sinus that ran from my nose to my ear. It was infected causing the TN. He said that without the MRI, he never would have caught it. He put me on Darvoset for the pain and Augmenten for the infection. He also gave me Nasacort to prevent another infection from allergies. Well the pain went away on April 2nd. April 10th, the pain came back with full force. I took my Darvoset, but it barely worked. I took more later and it did nothing to the pain. I called the doc and he gave me Ultracet (which is used for people who have pain from Osteoarthitis). That takes the edge off of the pain, but the pain is still there. I have found that if I have pain, I can take a Ultracet at the beginning, if it stops working I can take a Darvoset, and I will have a little pain, but totally bearable, unfortonatly the side effets are dizzyness and drowsyness. It is hard to write a book when the screen is spinning infront of you. He also thinks I have another sinus infection so he gave me Ketek. Hopefully this works. My husband doesn't understand the pain I am in and my kids get scared when they see me cry because of the pain. Hopefully someday a drug will be invented to keep this pain away for good. Name:
"dustwaits" The pain in my head, follows a path as if my head were actually cut in half. The pain which comes at its' own will, is relieved somewhat by the nerve blocks. I am interested to know if YOU have had any of the blocks, did they relieve your pain? Did the pain come back after the initial anesthesia wears off? I'd love to hear from you if you have endured any of this sort of pain or treatments. Thank you. Name: DON My story was posted on October 12, 2004. I had suffered from what was diagnosed as Atypical Facial Pain (facial-neuralgia) for more than six years following a root canal. A couple of years ago I was told by the director of a pain centre I am a patient of that there was no resolution and all the clinic could do was provide medication. I had asked dental professionals many times over the years about extracting the tooth and was told each and every time there was no evidence to suggest removing the tooth would resolve the problem. I was also frightened into not removing the tooth by being told by both medical and dental professionals that the pain could get even worse if I chose to extract the tooth. About eight months ago the combination of pressure from a friend of mine and the fact that the medication I had been on for almost two years appeared to be weakening in effectiveness I began searching for someone to remove the tooth and had it extracted on January 4, 2005. I was left with a small gap where tooth 37 was, on the lower left side but compared to the pain I am now in paradise. I am still tapering of the medication I was on for the past two years but hopefully within another month or two I will be finished with the medications as well. To be perfectly blunt my gut feeling always was to pull the tooth however I do caution anyone who reads this that just because I was cured by a simple extraction it does not mean this same procedure will cure everyone with a similar problem. What I found was that in both the dental and medical professions no one person had all the answers and it was up to me to put the pieces together. Sometimes the arguments were very convincing but I was careful not to act without examining all the facts and when I put all the pieces together extracting the tooth not only seemed like a logical move but also the only thing I had not done. I just could not see myself on medication the rest of my life since any effective medication has side effects, usually some degree of sedation, creating ongoing lethargy. The Oral Surgeon who extracted the tooth agreed I had done everything imaginable except extract the tooth and because of that he had no problem doing as I requested. There were no guarantees due to a lack of physical evidence so I had to sign a waiver, but in my mind from a logical perspective everything pointed to the tooth and the Oral Surgeon agreed. A couple of months earlier I had a consultation with another Oral Surgeon who at that time agreed to extract the tooth but just asked me to think about it for a little while. A couple of weeks later I called to make the appointment and through his secretary I was told he decided he would not pull the tooth and as well never spoke with me directly despite my leaving five messages during the coming week in order find out why he changed his mind. I found out through the College of Dental Surgeons that due to a lack of physical evidence indicating the source of the pain I could end up experiencing some difficulty in finding an Oral Surgeon who would be willing to perform the procedure. It was this Oral Surgeon’s prerogative not to agree to do the work but the way he went about it was very unprofessional. I suppose however it was an example of what the College of Dental Surgeons suggested I might experience in looking for an Oral Surgeon. Prior to this and out of desperation, about a year and a half ago I filed a complaint with the College of Dental Surgeons who found no wrong doing by the Endodontist who performed the root canal. Despite the fact the Endodontist tried to defend his work by submitting a psychoanalysis of any of my personal history he was aware of, the College did not even consider this out of line and stated in their conclusions that is was just an attempt to find the origin of the problem. For the record he used my father’s death and the loss of a job, both of which occurred more than 2 years after the pain began. Despite the fact the Endodontist clearly had all his facts twisted as the two year time difference shows, the College still accepted his attempt. The doctor who was at the time prescribing medication to control the pain submitted his opinion as requested by the College and he stated clearly the Endodontist should stay within his field of expertise, but the College of Dental Surgeons still maintained their position. When I submitted an appeal to the Health Professions Appeal and Review Board they also did not see anything wrong with the College of Dental Surgeons accepting the Endodontist’s comments. I am telling you this because it is important to know that we are not totally protected by the professions themselves therefore we still must be on our guard. I have not doubt most are competent in their professions but found some who were not only wrong and sometimes rude but I as well had an experience with one who I felt exploited my situation for financial reasons. This particular dentist billed my insurance plan beyond my initial exam/consultation without my knowledge. Through this web site I became friends with a lady and although we have communicated via email only over the past six months, she has helped me considerably through our frequent correspondence. I cannot thank this lady enough for her interest, support and frequent kind words. It is clearly evident that I could not have been suffering from Atypical Facial Pain if an extraction left me pain free. I pray that all of you find a cure for your pain. I lived with it for six years and know how it can affect a person’s life. If you have any questions please do not hesitate to email me. If there is any information I can provide through my experience that might lead you to be cured as well I will be happy to share it with you. We may differ in the kind of pain we experience but the frustration can be the same. Although it is easier said than done, never give up hope. Name: Tara Im 28 years old and have 2 children and a husband.Well it was about three weeks ago when the pain started.I was with my husband in the truck when i felt this dull ache coming on in my left ear! I thought it was a ear infection coming on! Then about 5 minutes later WHAM!!!! It felt like someone stabbed me right in the ear the pain was so bad it put me right down in the seat. Then my whole left side of my face went numb!I called the doctor and made an appointment and thought i had one heck of an ear infection.By 11:00 pm that night i was in the ER in tremendous pain!When the doc looked in my ear and told me that it was fine no infection nothing i couldnt belive it!!So i went to my regular doc and he tells me its neuralgia!I was so scared and in denial and thought something else must be wrong so i went to the dentist and had my upper left molar pulled thinking that was it man was i wrong there was no infection or anything just 2 surface cavitys.Now im in more pain than before and it seems to center in my ear canal and my head.I tried the tegrotal and ended up at the doc becuse it though i was haveing a stroke and they ordered an Mri and took me off the med!!I am still waiting for the results they should be in tommorrow sometime. Name: john this is an update from my previous report of 11/15/04 since my last report i have started having short term memory loss, the pain from my injury seems to becoming worse. i keep getting infections in my face which is centred on my temporal region, my cheekbone and my jaw. half of my face becomes numb. my right eye closes and itches. reading others experiences has taught me to live with these problems. my memory is getting bad. when looking at the tv i find once the adverts start, i cannot remember what i have been watching. it is debilatating! Name: "izzy" I have scleraderma. I aquired a virus 7/01 which set my immune system off. I didn't realize it at the time though. Throughout the summer, fall and winter I suffered from intermittant pain in my throat and ear. I was treated several times with antibiotics even though no infection was ever found. 3/02 I was suddenly hit with horrible pain. I couldn't bear any touch to my face, no light or sound. It was the worst pain I could imagine (still is). In a relatively short period of time I was diagnosed with glossopharyngeal neuralgia. My rheumatologist believed that my crazy immune system caused vasculitis which caused the GPN. I started huge doses of prednisone for vasculitis and neurontin for the pain. After going up so high on the neurontin that I couldn't even get out of bed, I tried tegretol. Once again I couldn't take a high enough dose to stop the pain or even lessen it. My neurologist sent me to a pain clinic because he couldn't think of anything else. After 7 months of this neurologist's "help" I was no better off. I have a brother who runs a CT scanner at a major hospital, he turned me on to a neurosurgeon. The surgeon gave me a cocaine test (liquid cocaine on the back of the throat). He decided I could be helped by a MVD. I saw him on a Monday and was having surgery on Friday. I did have a screaming headache for more than a week after the surgery and I could barely talk for 3 months, but overall the surgery seemed to have worked well. I was seeing a new neurologist by this time and she started me on trileptal. I did very well for about 6 months then the pain started to return. All this time I'm still taking steroids (which caused osteoporsis). My neurologist started me on lamictal to go with the trileptal and the cocktail has worked fairly well for me. I was able to return to work full time. Unfortunately, the vasculitis and steroids caused osteonecrosis and I had to have a total left hip replacement and both shoulders replaced. 3 surgeries within 6 months of each other (the last on 2/16/05) and the pain in my face and head has come back with a vengeance. The dosages of trileptal and lamictal have gone up again to the point that I can't drive and I tend to fall down (hurt myself pretty badly at physical therapy today). I'm thinking of setting up another appointment with the neurosurgeon to discuss cutting the nerve completely. I can't live with the pain but I can probably live with numbness. I'm on high doses of antidepressants. I need a sleep aid even though I can barely stay awake during the day. Like many of you I sometimes feel that it's almost too much to just get up another day. Once again I'm feeling pretty desperate. By the way - I'm seeing an EMT on Monday about hearing loss that started after I had the MVD. Name: "jj" After a history of dental problems with upper molars on the right side of my face, I finally had root canals in two of the molars. I was left with a tingling/crawling feeling on the right side of my face that tended to run from my upper lip to the top of my nose. The sensation tended to start out mildly in the morning and increase in intensity throughout the day, until by the end of the day it was so severe that it was quite annoying, distracting, and painful. I have had great success in reducing the sensation by placing a band aid or tape (the kind used to secure bandages) over the area where I feel the tingling/crawling. It just seems to calm it right down. Name: Sandi A little over 2 years ago while healing from a very difficult "hysterectomy from hell" I became stricken with THE DEMON.....Trigeminal Neuralgia! Of course, in the beginning just as many of you have written.......I went to the Dentist (an endodontist) (I work for a group of General Dentists, 18 yrs.) thinking I had an abcessed tooth, but all was well in the teeth dept.. My surgeon who nearly killed me with a hysterectomy prescribed Percocet and sent me home in tears (due to the pain in my face). I know she thought I was nuts! The pain, extreme shocking sensations and tingling became unbearable. All I could do was sit in the middle of my bed in my dark, cool bedroom, hold onto my face and cry. I couldn't eat, sleep, or think straight. Hey, I thought I was losing my mind. My pain was so severe I wanted to die! I'm a very brave woman who can tolerate a lot of pain, but not TN pain, no way, not ever! One of the Drs I work for suggested a pain clinic so I went. I was injected right into my face in front of my ear, was numb for several hours and pain free....until the next day that is. SO I went back 3 more times for injections. The severe pain in my lower right jaw affecting my teeth, tongue, cheek and lip was unrelenting. My whole life was turned upside down and inside out. I was then referred to a Neurologist who after poking & prodding {nearly my entire body} during 3 long visits decided to start me on tegretol. This med. began to take the edge off and after the incision in my abdomen finally healed 6 weeks later things got better. The constant pain was finally gone, however I still could not touch certain areas of my face without just about jumping out of my own skin and I still had episodes of intense bouts of pain lasting for hours which I just learned to deal with. Actually, I shut myself off from everyone, locked myself in my room and just cryed. That's all I could do. For about a year I was pretty much pain free and was losing that scarey, paranoid feeling when BAM!!! it has hit me again. It started this time just a few days ago feeling like I had a dull tooth ache. I was going to go into work and have an xray taken when that morning while brushing my teeth I felt that all too familiar electric shock in my jaw, cheek, tongue & lip. I felt totallly panicked!!! I'm going to call a different neurologist tomorrow and hand him/her all the information and research I have done on my own and tell that DR. what I have and what I want to do! I am an intelligent woman, I've read and I understand what TN is, but most of all I know I cannot and will not sacrifice my sanity and happiness for this damn disease! I'm very interested in and nearly sold on the idea of MVD surgery. I'll be 40 next month, I'm a widow with 3 children, I'm suffering with severe back problems which I'm being treated for and am in constant horrible pain with, I work full time, have dealt with depression, starting over again and again and again and I refuse to allow anyone to tell me to take another pill and just get some rest! I have a lot of life left in me and I want to live it! Wish me luck as I wish each and every one of you. Please tell me what you think of MVD surgery especially if you've had it. And hey! DO NOT GIVE UP! Do your research and make your Dr. listen to you. I'll post again after my visit with the Neurologist. Please feel free to write. I promise to write back. It may take me a few days as I keep a very busy schedule but I will write back. Hugs, Sandi Name: P.M. My TN started about 8-10 years ago. I had recently had a tooth implant so when the pain started I called my dentist. He recommended Aleve. The Aleve worked a little bit. Finally the TN went away. Then it came back. Then it went away again. Then it came back again. I was told by my dentist that I should take Tegretol, but having had a bad experience with it before (convulsions, hospital, ACTH infusion), I declined. Then I mentioned the TN to my Neurologist. I see him regularly for my Multiple Sclerosis. He originally put me on Neurontin. That worked for a while. But the TN came back in spades. I couldn't eat, drink, laugh, brush my teeth, or even talk. That's when my Neurologist gave me a sample pack of Trileptal. Hooray!!! It eased the pain. I've taken as many as four 300mg and as few as one as the pain ebbs and flows. But I always know where my Trileptal is. Thank God for Trileptal. Name: "Debi" Last May 2004 I had what I thought was another bout of TMJ. Usually it lasts a few days then goes away. This time it was more severe and was not going away. I saw my family doctor who put me on Vicodin and refered me to a dentist. The dentist put me on more pain medicine and pulled three teeth. The pain didn't go away and the pills gave me ulcers. I was then sent to a Neurologist who put me on more pills. I couldn't function on these pills and the pain was still unbearable. I finally saw a Neurosurgeon who suggested many options. I chose the nerve decompression. I knew the risks but if it would get rid of my pain, I would do anything.In October2004 I had the surgery. I still have some numbness and pain around the scar. It feels like the TN Pain is hiding way back waiting to come back out but for now I can talk again eat again and smile again. I know that most people wait years before they try this surgery, but I have never regretted having it done. The numbness is annoying, but the pain was making me suicidal. Name: Julie Ann I was riding in the van with my husband in Jan. of 2004.I had a high stress job and was helping plan our sons wedding and running a small business from home. I was extremely tired the last several months. While chewing a huge piece of gum the left side of my face went crazy. I thought it was Bell's Palsy or maybe even a stroke but nothing was visibly wrong with my face.I was scared. I felt kind of sick and my head was crawling and my mouth went dry and if I raised my eyebrow or smiled I felt a wave of numbness in those areas that washed over my scalp. We went through the usual tests first to my GP who sent me to a neurosurgeon. Who sent me for MRI's. Everything came back good. No stroke no vein blockages no signs of MS he thought maybe it was some type of wierd migraine but really wasn't sure. Then the pain started in Feb. I thought they were sinus headaches and had been taking alot of sinus Tylenol which helped for awhile. But as I look back I was really having pain. Like icepicks stabbing my eye the side of my head or someone crushing the side of my head. There is a difference and if you can keep a jouranl or tell your doctor exactly what you are feeling it will help with your treatment. Then I was sent to a Neurologist in March who said it was Trigeminal Neuralgia and put me on Nuerotin. I did pretty good on that until May. Our sons wedding was almost here and with the extra stress of that I had a major flare up while on Nuerotin. I also starting getting alot of big brusies so my medicine was switched to trileptal. Which turned me into a complete sombie and I started gaining weight. I had a flare up and couldn't even hold my head up. Sometimes it feels like someone is dragging your face on gravel. Went to see a specialist at IUPUI, Indianapolis, Indiana. This nuerologist said that it wasn't Trigeminal and changed my medicine to Topamax. Topamax is a medication that is used for migraines in smaller doses. She felt it was some type of Hemi-cranial or Atypical facial pain or migraine. On Topamax you have to be careful not to get overheated, it ruined my sex life, blurry vision, sleepy, extreme breast pain and if you have a history of kidney stones it's questionable if you should be on it. So it also has it's own side effects. It really helped with the sensitivity I had to the sun and it worked pretty good on the pain until Dec. 04. I was caught out in a horrible snowy, cold wind which triggered a four day attack. It was such intense pain I didn't know where to crawl.This was the worse. It felt like my skin and muscle was being scrapped off of my face. I found a neuroligist here in town so I didn't have to travel three hours back to Indianapolis. She was convinced I had Occipital Nueralgia and with some pain blocks I would be doing great. I had two pain blocks. The first one I felt better for one day and the second pain block was so painful I didn't know if the treatment was worse than the ailment at that point. The anesthesologist was very good and if I knew this was a cure I would go back, but I am not sure it is the way to go. Now I have a fourth Neurologist who also said he is almost certain it is Trigeminal Neuralgia. I believe finding the right doctor IS the key. As many doctor's as I have seen over the last year you begin to know who has your best interests at heart and who is listening to you. He has changed my medicine to Tegretol and I am slowing weaning off of the Topamax. I have been terminated from my job since I hit the one year mark of medical leave and didn't have anymore LOA, sick or vacation time left. It's hard to explain to some one that you aren't a reliable employee at this point until your pain gets under control and then sometimes your medicine makes you extremely tired you can't be responsible if you can't function or feel safe driving or can't talk for certain lengths of time. It's all very exhausting. I also have TMJ and Rosacea. The Rosacea is difficult to treat since I can't tolerate topical medicines. I do not want anything touching my chin and lower left jaw where the worst pain is. Not to include the jabbing and icepic pains near eye, bridge of nose and temple area. Chewing, talking, laughing, singing at church etc are all very challenging. I find that ice packs on the back of my head help when things get out of control. And the quieter I keep my life the better I do. I am boping once I get on top of the pain I will be able to do more. I have been trying to read everyones stories. They have been very helpful to see what other's have tried and I can sympathize with all that are suffering. Please know that I pray for all of you. Name: Sheila A neighbor/friend died this week. A horrible death. She and I both had the Trigeminal neuralgia. She took anti-seizure meds. I chose not too for safety. Evelyn started originally on Tegetrol (spelling). It had the usual effects on her. The drug started losing it's effectiveness. She was switched to another drug, and started having severe abdominal pains, and had to change diets. But the effects of the drug caused her to lose 70 lbs in one year. Trying to help herself and being suspicious it was the drug, a doctor switched her meds again. Was doing better for a short time, but then side effects. She was then switched to Neurontin. (Now during these drug changes at no time did the doctors gradually decrease the anti-seizure meds before introducing the new one...a very dangerous and irresponsible mistake. She wasn't on Neurontin 3 days when she also took tylenol with codeine before going to bed. She got up shortly, dizzy and disoriented, and was placed in the hospital for a week, with the doctors not sure of what happened. She has had all kinds of medical tests. She had a little heart problem and scar tissue in her lungs. What concerns me is that Neurontin can cause heart problems in healthy persons. What happens when you give it to someone with an existing heart problem ? Doctors ignore that important detail. Well Evelyn got out of the hospital and been home a couple of weeks. Kept letting me know she felt she was dying. Last week I noticed the drugs having really strong effects on her. What I saw was not good. I prepared for the worse. The other night she went home to get ready for bed...seemed fine during the day according to husband and neighbors. Was laughing and socializing. She got home and started having the same abdominal pains caused by the other anti-seizure drug....then doubled over, had a heart attack, lost consciousness and all response. The paramedics could not do anything. That night the emergency room doctor said to her husband that she was near brain dead. I went to see her while she was unconscious but on life support the next morning. On the neuralgia side of her face there was no apparent nerve activity. As I stroked her and spoke to her unresponsive body, trying to obtain a response, I placed my hand on different areas to feel for signs of life. The front central part of her head was as hot as a hot burner. So hot I immediately withdrew my hand. I recognized the "type" of hot. I get it but not as hot from my atypical neuralgia. From the center brain forward it was absolute "FIRE". Reminded me of effects I've had from Motrin. I am convinced she died from the Neurontin. Evelyn's gone now. It scares me. Even though I do not take meds, I get the abdominal thing from time to time and appear to suffer heart effects when the nerves are acting up. I will not forget the horrible way she looked, the sudden shock, pain, and apparent major seizure that gripped her as she lay on life support. Death causes losss of heat from the body. She was hot as a hot burner in the area described. Explain ? Name: "snowflake" Wow, I can't believe I found this site. It took me 6 months, since my diagnosis, to find it. First, let me tell you, this is a horrible disease. I don't even know where to begin! In Sept. of 2004, I noticed some pain in the back of my mouth, where I had a recent crown. I noticed some hot/cold sensitivity. I saw my dentist, and he recommended root canal. I was then put on antibiotics to prevent infection.Within 3 days, my face was beginning to swell, and my pain was intense. I was brought to the emergency room, where the doc increased my antibiotics, increased my pain meds, and sent me home. I saw my endodontist, and he looked at my dental x-rays, and said my rear tooth was fine, and took some ice and proceeded to touch each tooth with it. He found the offender, as I nearly went through the roof. I had my root canal, and was sent home. I was told to stop the antibiotics. I went home, and within 4 days, my face again was swollen, but this time, it looked as though someone punched me. My husband was scared, as my fever was now 101 F, so again, to the emergency room I go. The doc saw me, and thought I was hit until I explained what was going on. He recomended IV antibiotics, as my face was bruised, and I , being a nurse, decided to talk to my two dentist/endodontist. Then, my antibiotic was switched, and my fever was still high. I actually slept through my beloved Red Sox winning the world series as I was too sick to stay awake. My facial pain was worse, but not as bad as it would be. I called an oral surgeon, as my face was sore, and he did a panormic x-ray, and my teeth were fine. Atypical Trigeminal Neuralgia was the diagnosis. My pain has a name. A really big name, but it's a really big pain. Off to my primary I go. I'm given Elavil and tylenol with codeine. No relief. I called Thanksgiving week, with the feeling of Zorro on my teeth slashing my cheek and gums, so I'm started on Tegretol, 200mg twice daily, and vicodin for the pain. Yeah, right. No relief at all. Thanksgiving was spent not only working, but in tears from the pain. I call her again, to tell her I'm in pain, and she saw me. Not only was I in pain, but weather changes trigger attacks. My face was swollen over to my nose, and don't even think about touching me. She started me then on Neurontin, 300mg twice daily, and MScontin for pain, and percocet extra strength for breakthrough pain. Trust me, I needed it. My pain never stops. I called for a refill, as I'm not out of pain yet. This is Jan. now. I was finally sent to a neurologist. She's awesome. She saw me, realized this isn't fun, and noticed that my management wasn't aggressive enough. She increased my neurontin, and increased my pain meds. Okay, I'm thinking, she knows what she's doing. She also started me on Tegretol, 200mg twice daily to increase by 200mg every three days until I'm pain free or toxic.Well, I'm also a migraine sufferer, and with all these meds I should never get one. I got one. Not only was I in intense pain, to the point my husband and children were terrified, but I was also very confused and forgetful. How scary is that? For 4 days I shuffled around, not knowing too much, and sleeping anywhere I could make a bed or lie down. The doc thought I may have had some encephalitis. Well, I recently had that pain again, only more intense, it put me to bed, and my face was on fire. Even now, as I speak, the area above my left eyebrow is stabbing, my cheek has occaisional slashing type pain, and my lower jaw has the tingly burning sensation. I have another migraine coming, and I can't fight them off anymore. I want to cry so badly. It won't help. I do see the neurologist on Tuesday, so maybe she can help again. She's trying so hard, but the treatments don't work. Anyway, thank you all for listening, and I hope that all are feeling well, and I pray for a pain free day for all too. Name: "momsface" About 12 years ago my mom felt a burning sensation behind her front tooth and thought nothing of it. She had just had a little dental work done and thought they were related. The burning was mild and she went on with her life The burning sensation got worse and worse and worse. She visited over 20 doctors who could find nothing wrong. MRI: normal. Cancer: negative. She had a biopsy done on a little legion on her tongue: benign. Her pain is mostly a constant burning sensation in her mouth. Lots of saliva. She has a light tingling sensation all over her face. She has lost 25 pounds, her sense of humor and her joy for being alive. She is now seeing a neurologist who has informed her that she has nerve damage all around her face. He has started her on a course of medication, with the hopes that through drug therapy the nerves will repair themselves. She needs to take tons of the medication for any effect and the pills make her tired and sound like she is drunk. Her doctor is especially interested in her deviated septum and feels that the nose damage may be pressing on a nerve that is effecting her whole face. HOWEVER he also is quick to mention that a reconstructive surgery on her septum may a) alleviate the problem b) do nothing c) make her condition worse. These are odds that she is not comfortable with. Has anyone out there experienced this particular dilemma? My mother actually said to me last night that she can't wait for me to have a baby so she can die in peace. (!?!?). She is 56 years old. I am scared and feel helpless. My mother is an amazing woman who is a shell of the mother I know because of this. Any and all information/experience would be very helpful. Thanks so much. Name: Stephen I have only recently been diagnosed with atypical facial pain, but like many of you fellow sufferers have been through the distress and anxiety of trying to find out why there is a debilating pain in my face and not getting many helpful answers. And also unexpected injuries that have made pain worse. I might get carried away and write a long story, may be boring and know when your in pain reading is not as easy as it used to be. Just my computer seems to have become one of my best friends and have plenty of time on hands so sorry. This is the story of my last 16 months for anyone who cares. I was only diagnosed just under two months ago, but the pain started in October 2003, following routine dental work. I had not been to the dentist for many years and drank flavoured acid (Coke) far to much. needed two fillings on upper right side and a root canal on left. Within a couple of days had a pain on upper right side. so went back to dentist, who said nothing wrong just have to let fillngs settle. ok and i trotted off. 3 weeks more, pain still there (not as bad as it is now) so again went back, same story. Spent next couple off months using tooth ache gels, sensitive toothpaste and pain killers. No change only seemed to be getting worse, Pressure/cramping type pain, Unable to sleep etc. Changed dentist who said fillings not done right still decay under, so replaced (at a cost). slight releif for a week or so thought I had it sorted, no such luck came on again. So went back to puzzled looks, dentist replaced one filling with root canal. Again slight releif, but when it came back it came with avengence. Dont know if I am a bit weird but not seen any stories (although have not read to many) mention a feeling seem to get that is quite scary. A feeling that I am not with it at all, that my brain is acting 1 or two seconds behind , like fog a fog rising in my head. Seems to come on when pain at worst. Feel like im out of dawn of the dead. I am usually quite laid back and take things as they come but this was horrible so went to doctor who did blood tests, came out clear, told him about pain in teeth he told me to go to dentist, so i did again. again they said nothing wrong. Dont see how this was cos pain in teeth and not sleeping suffering at work. Was advised by doctor go on a holiday, ok I thought so booked two, to make sure. First went on football trip to holland, nightmare, tried to keep up with friends on the drinking, smoking ;-) etc but began to struggle very early on and the more worn out became the worse the pain became and vice versa, became less and less co-herent with freinds. mouth was burning whenever touched a drink. spent the last three days lying down but when it came to play the football got up and played, apparently very well coming second in player of the tournament.(Weird - can hardly remember any of it - So worn out.) went back to dentist when got back, looked at me like the weirdo i felt. gave me some antibiotics. again some releif. and time to go off on second holiday, to portugal for Euro 2004 to watch England V France. Was going ok pain not as bad managing to deal with it, not drinking alcohol and making sure got sleep friends thought I was boring I didnt care I was almost pain free. But then suffered a rectal abcess (size of an apple) that hampered me for the rest of the week, something disgusting that i still blame on body being run down in weeks before because of mouth pain. Now was the first time I took any time off work (two weeks) even though had been in lots of pain before. Mouth pain came back and ass needed packing everyday for next two weeks. I felt wonderful. I was still getting this weird feeling in my head and was becoming even queiter amongst freinds. Realise I was depressed but knew it was more. but still no answers from any medis. so went to emergency dental hospital. who again replaced fillings etc.. and did a mould for mouth guard to sleep in. to pick up next week. Dad was now becoming very worried about me cos I was so switched off, distressed and struggling at work. Then that weekend a couple of friends dragged me out to the pub (first time in number of weeks) because they were realised how I was struggling. So I went out even had a few glasses of beer, then I suggesting going for something to eat. Left the pub on our way for a curry, only to be confronted by 6 or 7 men shouting at us. It happened very quickly as I saw my my first friend punched to the floor, I looked at my friend Tom only to see the same happen to him. I was stood looking at the group as quiet as had been in previous months. Then they came towards me. The next thing I know I opened my eyes felt really groggy, I was on the floor a big group of people around, police officers and an ambulance. People were saying stuff. but it was all just mumble, like the teacher in charlie brown. My face really hurt. The normal pain and worse. I touched my face, it really hurt pulled hand away and it was covered in blood. looked at myself covered in blood. Could also feel lower right jaw moving and grinding. Anyway got in ambulance and went to hospital. Got there had to wait, freinds told me the men had punched me to the ground till unconcious and then preceded to kick and stamp on my head and then ran off. Couldnt beleive it all this pain before then this. Hospital took x rays, they told me I had fractured back right jaw and told me to go home and come back in few days when they have free spaces. I told them lower front right was agony and thati could feel moving and grinding they told me it was nothing and sent me home. The next two nights were horrible I had the pain in upper right jaw, the burning, cramping, pulling throbbing then the grinding movement in lower jaw, the right side of my face was massive I looked worse than Rocky from Mask and blood kept pouring fom my face. I spent two days in bed on blood soaked pillows. Went back to hosp and again told them about pain fro assault and also facial pain. After 3 doctors looking at x ray, turns out my jaw was broken in two places. immediately sent for operation. Two metal paltes inserted. Mouth wired together. Which I tried pulling off when coming too from op. I was in agony still had all pains. spent 4 more days in hosp. everyday telling them off original pain. To which they would patronise me with 'You have broken your jaw it will hurt' and 'Your in shock you think you have more injuries than you do'. After a few days the origainl facial pain seemed to go, this lasted for 4 to 5 weeks, I thought it had gone I was so happy. I was sleeping and enjoying life for the first time in ages, even though I was eating through a straw. But pain started to come back, tried to explain again to specialists but took a while for them to listen to me, maybe because they couldnt understand me because of the wires. Anyway Im going on far to long here. They started to listen to me and as my jaw got stronger the pain got worse. The pain has now become very electrical in feeling in the upper right and along my tongue, almost like my tongue is being cut with scissors. I had an MRI scan and doctor diagnosed ATFP. He told me that they are not sure what causes it and that it has been linked to depression. I am depressed but had the pain long before. The doctor actually told me maybe I was the type of person to become depressed. This I disagree with I have been through a nummber of things in life before that have hurt but accepted them and got on with life. (If you want to know - mum died of breast cancer when I was 12, brother died 4 years ago due to problems from meningitis when he was young.) They were hard but this is the hardest thing I ever experienced, I am in almost constant pain, I feel like a Zombie, I hardly smile, i am frustrated, I am worn out - struggle to get to sleep, have to whatch what I eat as things seem to trigger pain. Feel bad for my family as burden to them. I am now on a waiting list for pain clinic for help. I am so worn out and on another planet whenever the pain comes on. When the pain is not there I feel so much different. Due to being on waiting list still on normal pain killers, some give temporary releif. Tried anti depressants at own request, horrible side effects, one made pain worse. Oh and now I have lost my job, they would not renew my contract due to sick abscences. Any advice would be great, just want to talk to people in same postion as difficult to get across to people (doctors/friends/family) the physical and emotional rollercoaster im on. Sorry for being boring but it has made me feel better for the last half an hour. Name: Steve S March 2005 - Hemi-facial Spasm - Left side of face. I had extreme discomfort for years. I could not face bright lights, music, loud noise or talking directly face to face with people. I found a surgeon in Salt Lake who knew just what to do for my condition. I am now in my 10th day after surgery. The doctor enter the skull behind the left ear and place a sleeve around the 7th facial nerve. This separated a relaxed blood vessel away from the nerve. He made a 2" incision and went through the skull. The surgery lasted about 4 hours. But when I awoke, my condition was 100% cured. I have had daily headaches but these should fade over the weeks ahead. I take pain medication every 4 hours which keeps me a bit doppy with the blahs. But what relief to free of all the stress, twitching and brain storms. I think I have found the best doctor in this region for cranial nerve diagnosis. I have before and after pictures that can be e-mailed or would be happy to discuss my experience. I love surgery that WORKS ! Name: Frank First let me say how much I appreciated finding this website. I wasn't sure what I had, what help was available, that frightening uncertainty. This morning I put neuralgia into Google and here I was. I have a short history of this condition. I am not suffering like it appears so many do. I first noticed the pain about 8 months ago. A friend suggested it sounded like neuralgia. I was reading a book at the time by Dr. John Sarno, because I had had a bout with back pain and his TMS approach helped. He mentioned neuralgia as a possible result of that condition. Applying his low-tech technique to the problem helped and I was pain-free for months. Last week I lost a whole night's sleep after a very stressful workday. And the pain began. I thought it might go away quickly like it did last time, but it's been a week now and if anything it's gotten worse. It sure is a relief, however, to know what it is. And to have a support group. One thing I have noticed, maybe some of you have experienced this, too, is when I have to endure the touching of the area on my scalp when shampooing or drying my hair, can't avoid touching like I have been doing, that it causes me to sneeze. Thanks for listening. Frank Name: "leejcarroll" I have had most, if not all of the meds, therapies, and surgeries available. I want to let you know about my book, A Pained Life, a chronic pain journey. It is the first first-person account of the daily living with and struggle against trigeminal neuralgia. An excerpt can be found at http://www2.xlibris.com/bookstore/book_excerpt.asp?bookid=18435 and the book at: http://www2.xlibris.com/bookstore/bookdisplay.asp?bookid=18435 Thank you, Carol Levy Name: Mary I have had all my teeth on the lower side of my jaw root canalled and capped. No relief from the pain. I have been on the above medicine since the end of Dec. 2004 and it has not helped me any. I am due back to see Dr. Cohen in Phoenix the end of this week. Name: Simon My father ,now aged 86, was diagnosed with Trigeminal Neuralgia about 8 years ago.Attacks at first were isolated (a few times a year), and responded to treatment with Tegretol. A particularly severe attack occurred 7 years ago. Acupuncture was tried but to no avail, but did respond to big doses (1200mg) of Tegretol). Since then attacks were intermittent and not particular severe, always responding to moderate or small doses of Tegretol. There was never an identifiable trigger for these attacks, mild or severe. About 4 months ago ,again with no apparent trigger or reason he had ,over a period of about 10 days, several severe attacks during which he was unable to talk or eat due electric-shock and burning pains on the right temple, eye, and upper lip. Gabapentin together with Tegretol was prescribed. His neurologist thought the symptoms were atypical of both TN and cluster headache and changed the drug treatment to include a high but decreasing dose of Prednisilone whilst co-currently reducing both the Gabapentin and the Tegretol to zero with the aim of starting treatment with Verapamil.I n the course of this regime a moderate to severe attack occurred which was controlled by a big dose of Tegretol and subsequently to the holding dose of 3/200mg per day. Increasing the dosage very much above this level causes loss of balance. The recent manifestation of pain is an actual painful tic behind the right eye, very sensitive eyelashes and pain when blinking. An MRI scan showed nothing remiss except the possibility of a sinus problem. This has been looked into by an ENT consultant who has ruled this out. The neurologist does, not seem to have much idea where to go from here. He has suggested hospitalization and withdrawal of medication to get a clearer view of the symptoms and possible use of Verapamil. This seems like a very painful experiment without any clear benefits. Amitryptiline has been tried , which has a powerful effect in sending him to sleep but does, nt do anything for pain or frequency of attacks. Osteopathic treatments did not reduce the pain much but made him feel rather better, It included advice to avoid rotary head movements. Other treatment suggested but not acted upon,was gamma/linac knife treatment. The changeable nature of the attacks is puzzling. Has anyone else had an experience with symptoms and treatment options for TN or cluster headache sufferers of this age? Has anyone else had experience with symptoms and treatment options for TN or cluster headache sufferers of this age? Name: Kimberly
I have suffered with Bilateral TN, and ATFP for almost 13 years now. I have
posted 2 stories about myself on Facial Neuralgia Resources. Back in 1993 is
when I first felt the pain begin, it took almost 2 years for the medical
field and dentist to figure out what I had. I, like many others, went
through dental work, but not to extreme. I had one tooth pulled and a root
canal in another, which is more than was necessary. Name: JOAN hELLO FELLOW SUFFERERS-TODAY WAS MY WORST-ABSOLUTELY UNBEARABLE. I WON'T DWELL AT THIS POINT. MY SORT OF REAL BUMMER FEELING IS I HAVE CORRESPONDED W/ 3-4 TN PERSONS AND HAVE YET TO BE REPLIED TO. WHY? THIS SITE IS WONDERFUL AND HAS HELPED ME SOMEWHAT, ACTUALLY QUITE A BIT EMOTIONALLY. WHY DOES NO-ONE WRITE BACK? I WILL TAKE THE TIME ONLY A FEW MORE TIMES BEFORE I GIVE UP RELUCTANTLY AND SADLY. SOME OF THOSE I HAVE WRITTEN TO I HONESTLY FELT I HAD INFO-PAST EXPERIENCES THAT MAY BE OF HELP. OH WELL, PERHAPS THEY ARE JUST TOO BUSY. Name:
Valerie I had a sinus lift in 9/03. It appears to have healed successfully. The implant crown was placed in 3/04. Since that time, I have had severe headaches (ice-pick headaches, as I call them), pain and rawness in my maxillary sinus and along the side of my nose on the affected side. Three weeks ago the oral surgeon cleaned out the area and it was discovered that dental cement had been left under the gum and an infection had occurred. I am still experiencing the same pain and distress I had previously. The surgeon wants me to go to an ENT of his choice and my primary physician won't get involved. I won't have insurance that covers fixing this problem, so don't know what stepts to take. I believe that I have atypical neuralgia and/or damage to my maxillary sinus because of the procedures. I am now on Levaquin and Tegretol (which I am leery of taking). Any comments would be greatly appreciated. Val Name: joan i just had another bout w/ my husband. yes, he has been tolerant, what are his options? yet, it was he who said, "not all the dentists can be wrong joan" And it was today when he called agitated once again, "can't u work on our schedule and get up at a reasonable hour and go to bed at 6 instead of 1 am? Well, I have just started to work out the medicine and yes i have been sleeping, resting til 1:00 and begin feeling ok and late at night feel much better. anyways, this disease has raised havoc on my marriage and 3 teenage girls. He is not a nice person, hard working, loves his daughters and i am just a problem. 9 dentists, 7 extractions, pain . pain, pain, finally a neurologist, yes i have TN. cymbalta put me another planet--worthless. tegrital, pet me to sleep and grind my teeth real bad. Neurotin has been my savior. PLease write me and tell me the next step since i have days the neurotin does not work. However, tylenol has really helped me. please write. i did write 2 persons but never heard back. that bothered me, hope they are ok. all my best to my fellow persons suffering in the house, in the bed, outside and within themselves. it is so horrible days i would like to end it all sometimes just so my unnice mean husband would have to live w/ his cruelty-he doesn't even see. please write me. joan Name: Stephanie I am desperate to find someone that will help me. I am 23 years old and have been trying to get help for 2 years now. Up front I want to apologize for my spelling and grammar, but I am at work and have to type fast:) in 97 I got major Jaw surgery for an underdeveloped jaw, I also have horrible TMJ. I was ok after the surgery. A year after that I got a tooth pulled and for years the dentist was trying to get me to get an implnat put in so my teeth would not move. Now after all my other mouth problems I decided NOWAY, but they finally talked me into it and on June 21st 2002 my life was compltley ruined!!! I got so depressed that I started to see a therapyst and she put me on all kinds of meds that I got addicted to and wheened myself of them. I am 23 and carry around a pill case and take 900 mg of nuerontin a day. That is what I take now and only take because nothing works. My pain mangemnet doc has performed 3 different nerve blocks that did not help. I even went to the MAYO CLINIC and they had no idea what to do with me, the doctor put me on tegratol. NOw the newest thing is my doc here wants me to get more MRI;s which in the past showed nothing!! I have to get an EGB and an EEG, which will probably show NOTHING. According to all these doctors nothing is wrong with me. When some one tells you, you have Atypicalk facial pain all that is is a medial wastebasket b/c they do not really know what you have. I have stressed my family out and I do not know how my boyfriend handles this. I was normal when we meet, now I do not go ut, hang with friedns. All I do is work 11 hour days, go homw and lay on an ice pack because that is the only releif I can get!!!!! I can not live with htis anymore. I need help. I do not want to give up just yet! My symptoms just get worse day by day. I am in sales a very high stress job and it just aggrivates it more, but this is what I went to $ VYEARS of school for so how could I just through it all away!! My face burns, aches throbes and all right by the implat, my mouth cracks and pops and I have a pins and needled feeling throught he whole left side of my face. I want to know if I would have gotten this if I DID NOT get the implant?? I need someones help, I am begging you. Thanks Name: "Joy" Hi,I,am writing this in hopes that it will lead to finding out what is wrong with me and what can be done to correct it. Approximatley three years ago I had all my upper teeth removed and was fitted with a full denture. The denture was of good quality and properly fitted.The problems than started, on the left upper gum I feel a sensation that is extremely hard to describe yet is very uncomfortable. It is not painful or burning, just a lingering agitation that will increase in discomfort and slight numbness to the gum. This condition exist only when denture is in place. I have had five Dentist and five dentures in a period of two years, each with the same results. In each case their was an attempt to adjust the denture in the affected area. None of the Dentist was able to diagnose the problem or refer me to someone that might be able to help me. One Dentist did suggest that implant surgery may resolve the problem, and I was willing to try anything at that point. A little over a year ago I had implant surgery performed (four implants and a bar) to accept an overdenture. I still have the sensation when the overdenture is put in place. The overdenture has been modified so that it not touching any of the surronding gum area and rest soley on the bar. Once the overdenture is in place the sensation will began and will get to the point of being unberable in about one hour. When the overdenture is removed the affected area will calm down in about five minutes. I belive that when the denture is snapped in place that the pressure is than translated thru the bar to the gum ares directly below bar and this will trigger the sensation. I have tried various medications to no avail. During the past three years I have had X-rays and Panos that do not reveal any abnormalities in the jaw structure other than slight bone loss due to extractions. Name: "Katy" In February 14th of 1998 I was working as a Tech then at a local hospital, I have worked there for 26 yrs.I ran down to get some x-rays and to tell the doctor they were ok, when I grabbed the phone and up my arm and out my lip was a big circle the size of a top of a coffee cup. It hurt like hot pins and needles, my eye was watering I could not hardly see so I yelled. Then it just went away. It was 9:00pm shift was over and I started for home. I stopped at the store and it happened again only this time the clerk had to write my check and I felt sick. I decided to head for home fast, but, sure enough It happened again and I went to ER. They did a CT found nothing so I was going to go on home when it hit again, they called my husband and he came after me. The next few weeks the pain just got worse, so I finally went to my doctor and he right then said, you have TN I just know it, so he sent me to a Neurologist and he also agreed. After that thing just got worse my eye hurt so bad I landed in the ER 3 times then they took me to a bigger hospital and Neurosurgeon did a MVD. the eye was not hurting anymore but, the cheek and jaw was so I was back to same thing lots of pain. Sometimes I would just pray to get it over with I just didn't care anymore. They changed my medicine again gave me pain pills darvoset, morpine and I became allergic to morphine and I overdosed because, the doctor told me to take it a certain way and I did so that is what happens some times. Next I had a Radiofrequency Rhyzotomy that has lasted for 4 yrs. Then the pain was so bad again in my cheek they tried a Gamma Knife it did nothing to help , but, I opened the door for others to try. Then one day while I was working the pain was so horrible that I had to leave, I called the neurologist he suggested a new medicine, so I tried it and I was allergic to it one night coming home I could not fine my home. The pain just kept getting worse I could not eat,talk, lay down walk or swallow it was just so painful. My husband called the neurosurgeon and told him to bring me in on a Thursday. This was Monday, I went to the ER 4 time within that time to get some relief from pain. Then I got to see Dr. Russell and he said we would do surgery. He did a Orbital Snipe, it is in my cheek he cut the nerves and filled the base. I still have some pain. Some days are better than others. I don't like the cold or the wind so I limit myself in what I do. I want to see my grandchildren grow up so I have to . Now I don't know if it will be right or not but, my teeth are bad because of neglect I guess. Thank you for reading my story. And please take care Katy Name:
"waterwels" My husband has been diagnosed with occipital neuralgia for 17 years.....doctors have been vague about the cause, cure, or treatment......The pain he experiences can vary from slight, stabbing "taps" to the back of his head, to excrutiating, hard shock-like pains that occur without warning or obvious cause......Usually they occur singly. However, there have been several occasions when he has had excrutiating, cluster-type pains, occurring in rapid succession and lasting for upwards of 10-20 minutes........During one of these latter episodes, he received a nerve block, and started on Neurontin.....after a period of time, the Neurontin failed to control his symptoms and he was switched to Tegretol....CT scans have shown no obvious abnormality......and though the Tegretol seems to control the intensity of the pains, it does not control the frequency and, in fact, there have been occasions where he has continued to have sudden onset, intense painful attacks..........It is frightening for him to experience, and equally frightening for me to witness the agony he suffers with these attacks.......Perhaps if we knew of a support group that focuses in especially on occipital neuralgia, he would find it a little easier to cope....we have read every piece of literature and information about this illness, but there does not appear to be any definite, safe method of curing this debilitating illness. Carol Bruce Name:
"Bette" I just wondered if anybody knows if there is a relationship between massage of the neck area and the onset of trigemnal neuralgia. I had a massage done and then the next day started experiencing pain. Name: Carin A long 2 years since it all began. Recently diagnosed with a fantastic doc at the University of Washington Medical Center specializing in oral facial pain. He says it's a neurological disorder??? Anyway, I've had 21 docs over the past 2 years treat me, from migraines to sinus infections. I was even hospitalized on 2 separate occasions when I was pregnant for weeks because the headache was so bad, and hooked on a PCA for pain. Anyway, if anyone can relate to these symptoms PLEASE PLEASE let me know what you do to make it better! Constant pain/pressure around and under my eyes, the bones themselves hurt! Pain behind my eyes, like someone is squeezing them! Entire jaw feels stiff and sore Slicing headache through forehead Face feels very heavy! Droopy at times (relates to the heavy feeling) Congestion in ears Very sensitive to touch When I breathe, it actually burns my nose and my sinus pads. There is nothing wrong with them per my ENT, but it's as if I have taken an entire pack of benadryl, and every breath I take is so intense, it literally hurts to breathe!!!! It's as if I don't have skin over those areas and it's exposed directly to air! Anyway, these are just some of my symptoms. Some days are better than others, but for the most part, it's completely draining! All I want to do is veg out, but my family is very dependant on me right now. My doc also wants me to go on nerontin, as does my best friend who is an anesthesiologist, but it sounds like the side effects are pretty bad! I'd love to hear from anyone who has similar problems. Oh, I also suffer from TMJ, and my Jaw frequently locks. The tooth grinding and clenching doesn't help either! Ciao! Name: Sheila I am 43 years old. Throughout my childhood I would on occasion experience shock like pain behind my jaw. It lessened as I got older to once or twice a year. About two years ago I experienced what I thought was a toothache in my upper right molar. The pain would come and go in episodes that progressed in intensity until the pain was constant on the right side of my face for a 24 hour period. It was so intense I almost past out. My dentist prescribed pain medication and anti-nflamatories. Over the next month little by little the pain subsided, but my jaw was left very weak. I could not chew food, and when I closed my mouth my teeth would hit on only one small area. Slowly my bite has gotten better. My teeth hit on both sides when I close my mouth but I cannot make them hit in the front. For instance I cannot bite a piece of lettuce with my front teeth, it slides through. My health consultant told me that nerve damage heals slowly, another year should see more improvement. I don't have anymore pain, however the area behind my upper right molar is tender to the touch. My jaw gets tired, which worsens if I do not wear a night guard that prevents clenching. I've not read anything regarding neuralgias where a persons bite has been altered as a result. Has this happened to anyone else? Name: john this is an update from my last posting, there is pressure in my skull, there is a definite diferrence between the right amd left side of my skull. its starting to get me down. unlike america, uk doctors take little care when putting someone on heavy drugs like tegretol. the pain is increasingly impacting on my life. when drivng i find myself falling into a void. i can sometimes remember things but if someone puts any kind of list in front of me i cannot comprehend or recall the least thing about it. during a test i couldn't mention even three animals in the world? i feel out of sorts as though i'm living out of myself my face feels lumpy the pain is starting to be more pronounced and sharper. its my driving thats worying me my job is thirteen miles away each way i need a car even on rural roads, which i drive. i feel like i have a tuning fork in my head it buzzes in my skull closing my right eye and Name: Mary Kay there has only been symptomatic relief from this pain and only from the combination of drugs as above. I hate not being able to eat chewy things or meat or fruit. That's what bothers me the most. MY family is somewhat supportive but have become frustrated with my constant complaints of pain and my inabiltiy to eat. Name: Nadia Hello, M I. y name is Nadia and I am 40 years old. I first experienced trigeminal neuralgia pain as upper right teeth pain and jaw about 13 years ago. Like most other patients I went to dentists, ENT doctors and neurologists I even had a sinus surgery which did not help at all. Some doctors even told me it is all in my head! I found out that initially sinus medications and carbamazephine helped more, but my last attack that started in August 2004 was so devastating that I lost 9 pounds from not being able to eat or drink. And I am a very small woman! Tegretol caused canker sores and blistering all over my mouth. Deeply I knew the pain is related to my sinus even though multiple CT scans did not clearly show anything. Initially when the pain was not extremely aggressive, nasacort and over-the-counter sinus medications helped. I would have excruciating pain for as long as six months and if I was healthy (no cold or flu) I was off pain for about six months. Dr. Philip Bartlette of California Pacific medical Center in San Francisco was the only one who actually listened to me and believed me. He performed a deviated septum surgery on me and told me he saw a sharp bone sticking into my trigeminal nerve. Immediately after his surgery I realized my sinus inflammation caused by perfumes and other environmental triggers caused increased pain. I have been taking the magical (capsi cool) cayenne pepper pills and nasacort spray to control the inflammation and the pain. I also found out about the wonderful, inexpensive and organic sinus buster spray that greatly reduced my sharp pains. I had my surgery on September 29 of 2004 and after three months I just use one nasacort spray per day and I am completely painless. Seeing a light at the end of the tunnel makes me wanna cry. Dr. Bartlette also mentioned he had similar patients that are cured now but unfortunately most stories on the Web are very depressing and the doctors prefer to prescribe harsh medications to control the pain rather than finding the cause. The only links that I found on the Internet between the trigeminal pain and sinus was on pub med : www.ncbi.nlm.nih.gov I will write back in about a year to report if I am completely cured. Please let me know if you have any questions. Best regards, Nadia Name: megan Hi, I have this most annoying facial tic, it started in my right eyelid 3 months ago, occasionally it is in the bridge of my nose and very rarely it goes down to the nostril on my right side. If I squeeze my eyes shut it brings it on. Unfortunately every time I sneeze it happens. sometimes for no reason, in the shower every morning when the water hits it. I have not had one single day where I have not had this since it began. My GP told me to take vitamin B and I have been doing so for 1 month yet it hasn't stopped. It did however diminish slightly but it is still there. If anyone has any ideas I would greatly appreciate it. Thank you Name: Kayze I haven't been truly diagnosed yet because all the doctors and dentists say they see nithing and I need not keep taking pain meds. The damn vicodin doesn't even help, and one doc told me to take ibuprofen HAHAHAHAH!!!! That is like sucking on a red hot... DOES NOTHING.... I am thru dealing with this because after thousands of dentist dollars and dr bills,,,,, no one helps me. Right now the doc says I have an infection.... I quit taking the antibiotics cause over the pasyt 1&1/2 years, I have taken about 22 rounds of antibiotics to not feel better, but to get a yeastinfection and an upset stomach....... I am at wits end help me please!!!!! Name:
"Vonnie" I began having a numb lip in April of 2004. After a while it began "spreading". I then had lost hearing in my left ear, it came back, went out and came back. I have constant ringing in my ears. I had my hearing tested. Just a slight loss in both ears. My doc ordered an MRI. Normal. So he sent me to a neurologist. By then I was having shooting pains in both sides of my face. He stuck needles in my face and said "Smile", he stuck electrodes on my face and shocked me. Then he decided I had bilateral trigeminal neuralgia. Ok. Take this drug (neurotin) and come back in two weeks. I lost my voice and sounded like a line backer. He changed drugs and put me on trileptal. It helped for a short while but it wasn't controlling the pain says I. Oh good says he, come back in 6 months. By that time I couldn't swallow and was having problems with pain in my tongue. He said I had told him that already (I hadn't). I decided that he was wasn't listening. I made an appointment with another doctor. This guy is great. He found out that I had lost feeling in the lower part of my face. He tripled my dosage of meds. I had a second MRI (it had been 8 months since the first). Normal. Tomorrow I'm having blood tests and spinal tap. He is talking about neurosarcoidosis. Don't know for sure yet but--if your doctor isn't listening - find one who does! There are other things that can cause trigeminal neuralgia and if it's on both sides be very wary. Nothing takes the place of a very good doctor. (this is not meant to be medical advice-always listen to your doctor - a good doctor). Name: Diana I was just diagnosed Christmas eve of this year. We went to Arizona to my brothers for Christmas and ended up going to urgent care. Before we left I felt a bad tooth ache coming on and wondered if we should go at all. But went anyway. I was reallys surprised when the doctor diagnosed me with TN. Many years ago I had some one tell me that is what it sounded like I had. I had root canals done and re done as well as sinus surgery. Now I wonder if it was all done for naught! This time I couldn't believe it was TN and went to my dentist as soon as we came back. He took x-rays and said everything looked fine. I told him that when I touched my teeth together the pain just shot through me, so he ground the teeth down so they don't touch. (that helped for a while) I was on pain meds then and the tegretal. I went to my medical Doctor the next day. She agreed with the diagnosis. There are still times that I think it is a wrong diagnoses. But I have had 4 days and no terrible pain. I have only taken on pain pill in the last 4 days. That is good, because there for a while I was taken a lot more for the terrible pain. From what I have read this will come back....I pray not. I seen my doctor again yesterday and she said I have to stay on the tegretal for at least the next three months and warned me that the pain may come back intensely. I still am having a hard time believing that it is TN. Because the pain starts in my bottom tooth area then shoots to my ear and then my throat and everything on the right side. Is there anyone out there that can tell me that they got over this terrible thing? Maybe just goes away? I went out in the cold yesterday and triggered some pain last night...but better today. Just reaching out to talk to someone. Name: Lori Aloha, I have read all of your stories and can sympathize with each and everyone of you. My facial pain started about 4 years ago after having a routine dental implant on tooth #30 (lower right molar). The pain started out like a bad earache, terrible burning sensation in the ear canal. When I finally went to the doctor he told me I had a condition known as Dysfunctional Eustation Tube disorder. He basically told me to go home, take and aspirin and call him in the morning. I was eating aspirin like candy, applying a heating pad to my face and it didn't help. I next went to my dentist and he thought it may be TMJ and charged me $200.00 for a mouth guard. Gave me a prescription for Dilantin but I got no relief. Went back to my Dr. (by the way, I have Kaiser) and explained to my Dr. that the burning, itching sensation was not just in my ear any longer, but now travels down the right side of my face and neck, my face and lips feel numb and tingle. She then referred me to an ENT. I went through 3 series of painful cortizone shots in my face, behind the ear, in front of the ear and down my neck. This would help the pain for a day or two, but then I was right back to the terrible buring sensation. Back to my Kaiser Dr. we then started on a gammet of drugs, Dilantin, Neurontin,Tegratol, Valium, Vicodin, Morphine, Oxy Contin and the list goes on. When these drugs didn't work she sent me to a Shrink!!! OK so now the burning sensation that I have been suffering from is in my head. Hmmmmm Of course I went and chatted with the head shrinker for several sessions, but the pain was still there. He prescribed more drugs and told me to go back to my doctor. Dr. now sends me off to see Neurologists, this is after a 2 CAT scans and an MRI, all of which came back clear. The neurologist diagnosis was Trigeminal Neuralgia, he upped the dosage of Tegratol, gave me more pain killers and sent me on my way. On December 13th I saw a surgeon in Honolulu who wants to change my medication from Tegratol to Trimadol (I believe that's the name of it) It's a lot like the Tegratol but the side effects aren't as bad as the Tegratol. I have read that you can take up to 1200 mg. of Tegratol per day before it starts to attack your bone marrow. I made it up to 600 mg. and my blood levels went off the chart. If the new medications don't work, the surgeon suggests that I proceed with the Gamma Knife procedure. I'm not so sure I want to have my head screwed to a table and have intense radiation blasted into my brain (especially by a Kaiser Dr) Today I took my husband to see his pain management Dr. for his back and he suggested that I talk to someone about a Stellate Ganglian Block procedure. I haven't done any research on this yet so I don't know what all it entails. He did explain to me that Atypical Neuralgia, which he believes I have, is not an easy problem to diagnose or treat. I am sick to death of swallowing pills everyday and still being in pain. My poor family has suffered right along with me. I am irritable all the time. Never really feel like going out and doing things. It hurts just to listen to someone talk. Flying tends to send me through the roof, this is a real problem as I live on an island, the only way to get around is by airplane. Driving to higher altitudes sets it off and it feels like my ear is plugged up with cotton. I get a terrible popping sound and the burning sensation in my eustation tube doubles. Do any of your doctors make you feel like a pill popping, pain killer freak? I'm embarrassed to call the refill line, I've even had nurses tell me that I am taking too much medication. What are you supposed to do? By the way, throughout all of the drug therapy, Dr. Visits, etc... I was doing cranial massage therapy. This gave me some relief for a few days. I don't know what the answer is, but if I find it, I will definately post it here for all you good people to see. Much Sympathy Lori
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