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TRUE STORIES Please note that treatments vary greatly depending on the individual. Do not base your treatment decisions solely on the personal stories you read here. Please keep in mind that the following comments do not represent a scientifically adequate cross-section of patients . Information here may be skewed and faulty, but on the other hand it is the closest thing at the moment to "the voice of the people"....As you read these stories, you might want to contact someone who has asked to remain anonymous or has requested their email address to be private. Please send an email to editors@facial-neuralgia.org describing the person you want to contact. If we have an email address for that person, we will forward your name and email address and let them know you would like to make contact. Name: Janna I began having mild problems soon after I had impacted teeth removed at the age of 11. My problems were mild until I turned about 33. It was at this time that I began to experience dramatic dizziness, nausea, muscle and joint aches, a flu like feeling all over my body, extreme fatigue and more facial pain, even memory loss.I suffered with this for three years, dragging myself home from a part time job and laying in bed for half of the day. I was under treatment by oral surgeons and an ENT who gave up on me. I then went into a health food store to get information for a friend suffering form ALS and learned of a doctor that treated jaw infections. After I underwent three surgeries for jaw infections, I felt better for a while.However, within a few weeks, my symptoms returned. While I was under treatment by the ENT, he had me doing sinus irrigations. My husband suggested running peroxide through the rinse. I began doing this and low and behold, my symptoms began to improve! It is not a recommended treatment nor a pleasant treatment, as it causes burning and drying of the sinus'. But,I have my life back, I can manage my symptoms now and was able to have my daughter, continue working and go back to school. If I do not keep up with the irrigations, my symptoms slowly return. Alos, if anyone has a treatment that is less drying I would love to hear it. Name: Paramjit Hello, I suffered for over 8 years before deciding to go under the knife and I am glad I did! I now wish I had done it earlier. I realized I was pain-free as soon as I woke up from under the anesthesia. I just cannot describe how happy I was when I found out that the surgery was indeed successful! Before the surgery, I did a lot of homework and research (http://facial-neuralgia.org is an excellent resource), and took 3 additional opinions from neurosurgeons. Being well-informed is extremely important in the decision to get surgery done. Finding the right surgeon, asking him/her a lot of questions, and making sure that s/he has done this procedure successfully is important, too. If someone has TN and is wrestling with the decision to get surgery done or not, I would say do not delay. Get the surgery done and be pain-free. Life cannot be any better! Name: Debra V. Well I guess it started a week ago, these little "attacks" of pain on my left side from my jaw to my temple. I thought it was just PMS or a tooth problem. Well yesterday I had 3 attacks and this morning I had an attack so bad at work I took 3 liq. Advils (which usually kick in after 20mins) that did nothing. I called the dentist and got an appointment right away. Of course after xrays and examining my teeth nothing was found. So I was doing research and my symptoms match trigeminal neuralgia. My question is does anyones symptoms last longer than 2 minutes. Mine seem to last anywhere from 15mins to 2 1/2 hours? Please email me with any info you have. I am 25 years old and after reading some of the stories want to get this taken care of ASAP!!!!! I know I have to go see a doctor, I am going to make an appointment with a neuro next week. Name: cathy Hello my name is cathy and my husband has had trigeminal neuralgia for about 4 years. this disorder has changed our lives in so many ways. first he was diagnosed with bells palsey. the numbness left his left side of his face after about 3 months. then the pain returned on the left side of his face and it would come and go. the pain would last maybe one week. the pain just came one day and didn't go away. my husband could not sleep, he couldn't enjoy a meal, he couldn't even talk to his family or friends. we found a neurologist who has help us by treating my husband with medications and also being a very caring person. he finally sent my husband to cleveland clinic to have the decompression surgery which he had in jan 2002 and he was pain free for about 4 months, then it came back and now it's just as bad as it was before the surgery. we are going to see another dr. in cleveland clinic that treats the disorder with radiation. he is welling to try anything just to be pain free. this disorder is not common. i am trying to find others that have this disorder and speak with them. my husband has been on so much medication that we look like we have a drug store at our home. i feel so sorry for him, he has lost a large amount of weight do to not being able to eat, because of the pain. there are times he has to sit up to sleep or i should say try to sleep due tothe pain.i just hope this new procedure will do the job and make my husband pain free. my husband has been on neurontin 2800mg per day, he has been on topomax 200mg. per day with percocet for break through pain. he has some good days when he is just about pain free, then there are more days that he can't even brush his teeth due to the pain. he has been in the hospital and give demeral and ativan to try to control the pain, but that didn't work either. if anyone has been through any treatment that has made you pain free please e mail me. thanks cathy Name: Misty I submitted my story about two months ago. At that time I was newly diagnosed. Since then, I've decided that this disease will not take over my life as it intended ( and almost did). My symptoms began at an extremely stressful time in my life. I have been on several medications to try to control the pain, but I've had a different type of reaction to each of them. After the last, I decided I would try to get through this without medication. I must be crazy!!! haha It is amazing how little the average person knows about Trigeminal Neuralgia. I, personally, knew nothing about it. Nothing, that is...until it slapped me in the face, literally. For those of you who are newly discovering the misery of TN, all I can say is suck it up, accept that you 've been given this disease, try to find something that works for YOU, and become as knowledgeable as possible this disease. For those of you who are long time sufferers, bless you... I know that there were days when you wanted to lie down and die..rip your jaw off with your bare hands and beat your head against the wall until it knocked you out....I KNOW. We've been given this and what is there left for us to do??? Nothing and Everything!! We need to try to pick up the pieces of our lives, learn techniques to help us deal with our pain, teach our families how to cope with the sight of a love done in constant pain, and be there for fellow-TN sufferers when they are in need. Here's wishing each and everyone of you a blessed Christmas and a pain-free holiday! Name: Mary 23 Dec 02. Last week I stated getting aches and pains all over my body, I thought it may be an onset of a bad cold. I came home on the thursday night after work not feeling well, the pain had moved to the back of my head, near the ear, under the bone and now down the side of my check bone. I had an engagement that night, so I went to it, I took a couple of drinks to try to relieve the pain, as the advil I was taking was not working. By the end of the night, I started to loose my speech, and my mouth twisted to the side. I came home, went straight to bed, and to my horrified surprise in the morning, I could not close my right eye (this is on my right side of my face) and my face was completely twisted. I panicked, my husband took me to a walk in clinic, as in Canada, you can wait up till 5 hours in emergency. I saw the doctor on call, and I explained to him that I thought I had taken a mini-stroke. He then did a few tests, and told me it was Bell's Pasley I had. He prescibed me some pain and muscle relaxant, but it just made me doepy and sick to my stomach. He mentioned that 99% of people who have Bell's Palsley recover in 4 to 6 weeks. Can someone let me know if this symptoms have happend to them, and if they are recovered, and how long do I undergo this massive pain in the back of my head. I'm to see my family doctor on 2 Jan 03, as he is on holidays till then. I hear there is exercise one may do also, please let me know some good advice so my anxiety will not be so high. Any thing positive you can send me would be more than appreciated. Name: Patricia Name: Goran Name: "anonymous" Name: Ann I am a 55year old woman. I was diagnosed about 3 months ago after complaining to my DDS for about 2 years ago. TN has taking over my life and I hate it. You never know when something you are doing is going to set this off BIG TIME. But the saddest thing for me is that I can no longer kiss my husband and I refuse to let TN take that away from me. I have been on about 15 different drugs and am now trying to take Triliptal. My doctor gave me a new drug, ActiQ suckers which are used my cancer patients and if you take 3 Advil and a sucker I can get some relief after I kiss my husband. What a price to pay. Even a breeze from the Gulf will set this off. Am not looking forward to visiting the north for Christmas!!!!!! Name: Siobhan StoryI am looking for some advice about surgical options. My TN was caused by a surgical mistake and I have been unable to find many others who are suffering from this because of an injury of this kind so it is difficult for me to figure out my options. I had a sinus procedure that damaged my infraorbital nerve (it was drilled through). I have been on multiple meds with little success. I am 30 years old, in constant pain and having miserable side effects from meds. I don't want to be on meds anymore but I can't function at all without them. I know if I can't get off meds I wont be able to have children which is a major concern because of my age and the fact that I am getting married in January. Has anyone had successful surgery? If so, did any of you have a nerve injury that was treated successfully? I have been told by many people that surgery is not very effective when the cause of TN is injury. I would also like to know if anyone has had an injury due to a sinus type surgery. I want to sue this guy but I've been told it's difficult to win a case of this kind. Thank you so much for taking the time to read this, I desperately need some advice and would really appreciate anything at all. Best wishes to you all Siobhan Name: Marin Hello to anyone reading this. I am now a 26 year old female living with trigeminal and atypical neuralgia and am contemplating surgery. When I was 21 I was diagnosed with lyme disease when I went to the emergency room due to the right side of my face being paralyzed. I found out I had bells palsey which is a symptom of Lymes. Within weeks the left side of my face, primarily my ear began to have excruciating pain. I was then put on steroids and various pain killers because no one knew what was wrong with me. At 22 I saw a ear nose and throat doctor who said septonasoplasty suregery would alleviate my pain since the prozac he put me on wasn't reducing my symptoms. I had the surgery and was still in terrible pain. That summer I worked at a camp and every day I took 12-15 ibuprofen just to get through the day. When I got back home the doctors didn't know what to do with me so I just kept my regimen of ibuprofen and darvocet which the doctor gave me. I was back in college full time and working full time when I went up to visit my now husband in albany. For three days I laid on his bed crying I was taking all the pills the doctor gave me, he had given me some new pain killers. Nothing was touching it, I kept calling a specialist (I forget what kind now) and they took two days to call me back and then told me to go to the emergency room. Once at the emergency room the attending physician said plainly "oh, you have trigeminal neuralgia". I had no clue what he was talking about and asked to see the medical reference book so I could understand. A month later I was at a Neurologist who started me on Neurontin, they proceeded to up my dose quickly due to my pain. At 24 the meds were still not working well, I had still been on my regimen of ibuprofen to help me cope. At this time it was near christmas and I was on medication for tuberculosis, I had non-active. This medication should not have been mixed with tegretol, however, I was on a cocktail on neurontin, tegretol, and my tb meds. I soon ended up in the psychiatric ward because I couldn't handle life, everything seemed surreal, and the pain was unbearable. After a week there, I was on disability for 6 months. In that time frame simple medications like sudafed sent me into convulsions. So we decided to move back to Albany, for better doctors, I have been up here 8 months and have been on several different medications on top of my neurontin which cannot be raised anymore. The last medication made me suicidal where within in a day I was crying, and had to call family for help while my husband was at work. I am currently back on disability because I could not keep my job due to too many missed days of work. So now I am waiting for reports to get to my surgeon and will probably be having MVD surgery soon. Hopefully it will help because I am devastated that at age 26 I am unable to do so much. Thank you for listening and if anyone wants to contact me please feel free!! Name: "Jveite" Hi, I will try to keep my story brief but as most of you who suffer from TN know it is not a short path to being diagnosed. My story begins in March of 1999. I had just had a baby and life was so good I had to pinch myself. One day I woke up with a toothache, so off I went to the dentist. He did a partial root canal and briefly alleviated the pain. I woke up in the middle of the night to a shooting pain in my face and what felt like a snap in my upper jaw. I went back to the dentist. I was in such pain that I had the tooth pulled. My life was in such turmoil because the pain was so bad. It caused migraines! I went overnight from being a happy new mom to being a miserable 27 year old. Then started the rounds with doctors, neurologists, oral surgeons, chiropractors, massage therapists. I then had more face pain. Finally I went to a dentist who did more root canals I had four root canals and a bridge on the right side. None of this helped. I eventually had the 4000 dollar bridge ripped out!! and still had terrible pain. In the spring of 2001 I found a family doctor who finally listened to me. She ordered several tests. I had a sinus CT, neck and back MRI, blood tests, contrast CT of my brain, and a MRI of my brain and face. After all the tests I was sent to a neurologist and was diagnosed with TN. He has put me on 2400 mg of Triliptal daily and it does make life more bearable. In the spring I am opting for the decompressing surgery. I am praying that this will fix the pain. The moral of this story is that you are not faking the pain, you are not out of your mind. Keep looking until you find a doctor who will listen to you and don't give up!!! I will let you know how the surgery goes and hopefully life will be good again!!! Name: Sarah My name is Sarah and I am 27. I was diagnosed with TN about 2 and a half years ago. I was lucky in that my dentist told me right away what I had. I wish it had just been a wisdom tooth like I had thought! I saw my dr and was given Tegretol. Boy do I hate that drug. I was able to get some of the pain to lesson at 800mg a day but I couldn't function properly and had to lessen the dose. I have seen three different neurologists with the first one saying he couldn't do anything for me, the second saying "go have surgery" and the third testing and testing me to make sure that everything else could be ruled out and really wanting to help. What a difference a good dr makes. I have been on a bunch of other drugs as well as neurontin that don't do anything to help with the pain. Physiotherapy has helped a little. It is believed that I got TN as a result of a car accident in which I suffered from whiplash. Months later, I got the pain in the left side of my face that would change my life forever. "Why me?" has been asked many, many times. I went almost a whole year without being able to give my husband a proper kiss and I had to quit work. There were days that I couldn't move, talk or eat because of pain. It is a nightmare. Something good did happen though as a result of my TN and that is my 17 month daughter. For women out there, beware that Tegretol counteracts the birth control pill!!! I am pregnant again and this time I haven't been on any medication because my TN has been taking a break for the last few months. I worry though about the future though. When my daughter was a baby, I couldn't let her touch my face or even pick her up due to the pain. I don't want my kids to see me in pain all the time and unable to go out and play with them. I just pray that maybe the TN will go away and never come back. Every day I fear that I will feel a twinge in my face and know that the pain is coming back. It really is no way for a young person to live Name: Ddusty Hi All, This is the third time I tried to submit something. I hope this is successful. Sometimes it's so hard to do things. I've been so through so much pain & disability that I'm amazed to say that with the help of Amerge, I have found some sense of normality. Just like so many of you I went through many meds. that didn't work or have bad side effects. Finally & accidentally I found that Amerge works for me. It is a migraine med. that is very expensive, since there is no generic yet. But I'm struggling with my budget to keep taking it regularly. A couple of you have tried this & I would be interested to know that it is still working. I thank God & my doctors for this med.. that has very little side effects & has helped me to live somewhat normally, although not totally normally, since trigeminal nerve activity is still present. I need to watch what I do. If I do not take the Amerge regularly, every 1-2 days, the pain & disability come right back full force. It is so hard to think of facing that pain again. I know what you all have gone through & am grateful for this support group. Good luck & prayers to all you TN sufferers. Sincerely, Dusty Name: "Jaime" I have been asked how much calcium/ magnesium I took to get relief from Trigeminal Neuralgia. My Doctor who told me to take for my bones said 1000 mg of Calcium and about half that amount of magnesium. The pain in my face disappeared, 7 months later I am still pain free. I don't always take that amount a lesser amount seems to keep me pain free. Hope this works for others. It is hard to believe it keeps me pain free after so many years. Jaime Name: Karen My oral surgeon took out my wisdom teeth 4 and left me with paraesthesia disabled in on the right side of my face jaw teeth tongue and so on. Please help. Name: "PK" I began having facial pain when I was in my late twenties. I went to dentists, doctors, no one had an answer. The onset of each pain episode became more painful and would last longer and longer each time until finally the pain stayed and never went away. As I have a congenital fusion in my upper neck, all doctors focused on at that area only. One neurologist even telling me that the pain was all from emotional problems. Did I really have emotional problems? Had I lost my mind? Did I really bring on this horrible pain myself? As a last resort my family doctor put me on Tegretol. Low and behold the pain was a bit better. I ended up taking 800 mgs of Tegretol a day. The pain was under control, but I had lost most of the control over my life. The fear of the pain returning turned me into a recluse. I did not leave the house much. I had been very active before the life of pain. The drugs also made me feel sleepy and slow. I was not myself. No one seemed to be able to give me an answer. Finally my husband found a website that had the name of a doctor who specialized in "A" Typical facial pain. He contacted Dr. Kaufmann about my condition and it was agreed that if the pain ever came back to the unmanageable stage that we would look further into the surgery. Well November 2001 was the worst time of my life. I almost jumped off the edge of a parkade when told that the only way I could control the massive pain I was having was to take enough Dilaudid and Hydropmorph that I would probably drop into a coma. Whoa, I was 39 years old and I just wanted to die! My husband contacted Dr. Kaufmann and he referred me to an oral surgeon who preformed a nerve block. It was a totally painless procedure (for me anyways) and it did stop the pain for about 3 months. It did leave my face numb, but I did not care, I was able to at least function. During this time I had just started a new job, What kind of employee was I? My employers were wonderful and very understanding. I thank my lucky stars for them everyday. On March 17th I flew to Winnipeg to meet with Dr. Kaufmann. We spoke about the almost 10 years I had suffered with little or no support from the medical system. We agreed that he would perform the MicroVascular Decompression surgery, even though there was no guarantee that I actually had TN. My symptoms were very a-typical When I awoke from the surgery Dr. Kaufmann told me that there was lots of activity on the nerve, 2 veins and 2 arterties we all pressing on the nerve. He placed teflon bridges on those spots and my life change immediately. I felt little or no pain from the surgery, actually I was better than I had been in years right away. I did contract an post-op infection, but looking back at it that was nothing compared to the 10 years I suffered. No one other than those who have had the pain realize the agony that someone with TN suffers from. Why me is a comment that came to my mind often, but then I always had the thought in the back of my mind that you are only given in life what you can handle. I must be a stronger person than I would have ever thought to get past the pain. I know that as it was veins removed from the area that there is a strong chance that the TN could and probably will return in time, but I know that I will know what to expect and will be able to handle everything that comes my way. I learned a lot in that 10 years and I now know to push the system as much as possible. Anyone out there who has the horrible condition, stick with it, find someone out there who will listen and care. Don't be afraid of the surgery. Nothing is better than being medication and pain free!!!!!!!!!!!!!!!!! Yahoo!!!!!!!!! Name: Lian Tyler My story: After nearly two years of a burning aching pain I was diagnosed with Atypical Facial Pain about 6 months ago after a root canal didn't get rid of the pain. The pain is always on the right hand side and mostly seems to be one of my front teeth although when it's really bad it's hard to locate precisely, then even my back teeth seem to hurt. It's not usually too bad in the mornings but it gets worse as the day progresses and peaks at about 4.00pm when I have to eat almost nonstop to manage the pain, the evenings vary, sometimes its bearable and other times I can't think of anything else. It also seems worse when I'm stressed. An update: I wrote a few months ago about my story and I just wanted to say thank you to all the people that wrote to me as a result. Although it's awful to hear of what you're going through it's great to have someone to share this with. Just thought I'd write an update. A lot of the people that have written responded to what I'd written about chewing gum. Eating food and chewing gum (to a lesser extent) are the only things that give me any real relief but obviously eating non-stop isn't really an option and chewing gum constantly gives me jaw ache! It does come back again after although even temporary relief is something. I've now had several emails from people who obtained relief from chewing including one man with ATP who had heard that it confuses the nerve as it's getting additional stimuli. My Docs have made no comment on why it works and didn't know of other people for whom it worked. I've just come off Amitriptyline after about 3 months on it. I went up to 80mg (with the instruction to continue upping the dosage until I found relief), I don't think it was working but I couldn't bear to stay on it any longer to find out as the side effects were getting me down more than the ATP - the drowsiness and constipation were horrendous. I am currently thinking about trying Capsaicin. Although I haven't managed to find it so far - if you know where I can get it in the UK please let me know. I haven't tried any prescription painkillers - I really didn't want to become reliant on them. I haven't found any non-prescription pain killers that even touch the pain so now I don't bother. I used to use clove oil and bonjela which would relieve the pain slightly but only for about 5 minutes (although I think it was more that there was a different sensation to concentrate on), although even that was welcome during really awful times. I've stopped using these now as I noticed my gum around the area was receding and I didn't know if they were the cause. I have booked in for an acupuncture session. I'll write an update on its success (or lack of) after I've been. So in the meantime, the burn goes on... My thoughts are with all of you fellow sufferers - I wish you luck in finding relief. Lian Name: Sally Hi, I wrote in to this site with my full story last spring..... I have the constant pain and burning of atypical face pain that gets worse as the day goes on. I have tried many things and am now considering hypnotherapy and am wondering if anyone has had any experiences with it? I am exhausted from this chronic tooth/gumache and deep burning and am running out of ideas!!! Can anyone help me....is it worth 90$ an hour to give it a try??? Thanks for any input...Sally Name: tina i was in an auto accident four years ago.i broke my lower jaw in 3 places.i was wired up for 16 weeks and it did not heal so i had to have plates put in to hold my lower jaw toghter.i have had some major pain . i have been on many meds, teg,neurotin zanaflex,pamalore to many to list or rember really.finaly after 2 years they realized my nerve was crushed and the steel plate is on it .i found a GREAT doctor who changed my life.since no medication was working and i had no options for m.v.d. or gamma knife, i had something experimental done. i had a spinal cord stimulator implanted onto my lower right jaw nerve.i can now controll the burning zapping jolts and no longer need to cover my face from moving air . i still have the tight tugging cold feeling but the bad bad pain is undercontroll. i have a scar on my right jaw line where the eletroids were implanted and then the lead wire goes under my skin to the back of my neck.then to my left shoulder and to a battery pack that is implanted under my left arm. i turn it off or on up or down by a remote i carry with me.i will need a new battery every 4 or 5 years like a pace maker i guess. i know this is olny experimental but olny because its never been done on a jaw nerve before. it has worked great for many other nerves like the spine and neck, back. and somebody has to be first to try something when there is nothing else . i hope i can help somebody else because of it. i was at the end of my rope and ready to cash myself in.it was degrading to have to try and eat with my family and be droowling all over. to have to wear a kerchief over my face and go to the bank or shopping or to get my kids from school. to not be able to kiss or have my food and drinks room temp. to not be able to smile. i was about done honestly.but now i have my life back to some extent. i can kiss and smile and feel a brezze agian. just thought id write and let some people know once in a while there is a happy ending. and if ANYBODY needs to talk to someone who can relate and understand email me. or once in awhile i come here and email someone else after i read their story. bye for now tina Name: mark My mother is considering which surgery will be best suited for her. She is leaning towards Glycerol injections or Radiofrequency lesioning. She is currently taking 3600 mg of Neurontin. Her doctor thinks this is about the maximum dosage that she should take. We both agree. Her pain from TN is getting stronger and more frequent. IS there anyone who has had experience with any of the above mentioned surgeries please let me and my mother know. Thank you. Name: Mark My mother is considering Glycerol injections or Radiofrequency lesioning. Her doctor says that the 3600mg of Neurontin taken daily is probably the most that she can take. She is 67 years old. She has been suffering with TN for about 6 years. The pain is getting stronger. She will make a decision on which surgery to undergo within the next 3 months, or until we can determine which surgery is best suited for her. Is there anyone who has undergone anyone of the 2 proceduers mentioned above. Please Email me with your suggestions. Thank you. Mark Name: Misty I was just diagnosed with TN three days ago, but have suffered for the past seven weeks. I am 25 years old, a mother of a beautiful 18 month old baby boy and a first grade teacher. My husband and I separated seven weeks ago and funny...thats when I first began having my TN symptoms. I don't think that I am worthy of describing the pain that I feel. It happens every night, usually after I have been asleep for a few minutes. It jolts me from my sleep and reminds me of its fury...I am very discouraged right now, as I'd hoped the medication would be some miracle "cure" for me. No one in my family or even community has ever heard of TN, so this web site is very much appreciated. Please, if there is anyone out there who may be able to offer some encouragement or words of advice, please do...My class web site can be found at www.letcher.k12.ky.us/teachers/mrcaudill. This site was completed when I had a normal life! I really feel as if I'm at my wits end sometimes...no one understands around here...I just am confused and tired and disgusted with it all. Name: Nancy I was 16 when the pain started, they all thought it was migraines and I must have visited every doctor in town. I am now 47, I just spend my birthday with and ice pack and a bottle of tegretol. Fun! My pain comes and goes every few years and this time I really thought it was gone forever. I am still hoping. I am on 800 to 900 mg. of tegretol. I can not drive, I just started to work, I've been out for a week and I forget everything very tired. My pain has been so strong that I have wanted to pull my hair out. I wanted to kill myself and I am so scared when my pain starts that I can not think of anything put when it's going to go away. I keep asking WHY ME! What did I do to deserve this. Know one understands they all think I am making it up for attention. Well just when I think the pain is gone I get one and I get all upset that I will never be in remission again. My kids say, oh her pain is back, my x-husband never understood, he thought I was allergic to him and after my divorce I did not have the pain for a long time, so I thought I was allergic to him. O well what else is out there that I can try, I have done everything except the surgery. I am very close to having it done. Only us that suffer from this understand what we go through and how bad the pain really is. I had two kids all natural no pain killers and I could have 10 more and this pain is worse. For us that suffer, is there a doctor out there that can fine something else than drugs and this horrible surgery? Name: Teresa It all started after having Lasik eye surgery! About 1 week later I was in the emergency room with a terrible pain. It felt like someone was sticking a knife through my eye into the back of my head. They did a Cat Scan, a Spinal Tap, and took blood work. All they could come up with was it must be cluster headaches. They gave me demoral and it didn't even phase me. They said there was nothing else they could do and sent me home. I was in so much pain that I went to another hospital emergency room a few days later and luckily they had a Neurologist who had just been teaching them about Trigeminal Neuralgia. They called him and he was able to see me that same afternoon. He gave me an injection of Depo-Medrol 40mg and the headache was gone immediately. After about 2 weeks my headache came back. I have gone to a pain management dr. who has froze this nerve. I have tried neurotin, tegretol, loratab, and several others. I am now taking methadone, celexa, and topamax to help deal with the pain in between shots and the depression that goes along with this terrible disease! I have been told my only options are to either have the nerve cut. Which there is a very strong possibility that this could cause worse problems or have a nerve stimulator inserted. I am very nervous about this but can not stand to keep living with this pain. I have already been fired from my job because of missing to much work. I am very depressed and this takes its toll on the family. I am in counseling now as well. Is there anyone out there that has had this same reaction from eye surgery? I would like to hear from you. Or anyone else who understands what I'm going through. Thanks..T Name: "Harpo" I RECENTLY HAD THE GLYCEROL INJECTION BUT IT DID NOTHING. I HAVE THE SAME, IF NOT MORE, PAIN WHEN I EAT OR TALK. I AM CONSIDERING THE GAMMA KNIFE (I'M DESPERATE), AND WONDERING IF YOU ARE PUT TO SLEEP WITH THIS OPERATION? THE NEURONTIN DOES ABSOLUTELY NOTHING FOR ME, EXCEPT MAKE ME TIRED. Name: Sandie MY SYMPTOMS were.... (pre-exploratory surgey, the removal of bone, bone marrow and tissue/march 2002)= facial oral swelling/edema, redness/erythema, bone pain, trigeminal pain/shooting, spiking temps, elevated wb count and neutrophils, hot spots facially, enlarged lymp-nodes, hot sweats, red sore gums.... erythema mirgains on the tongue/ left side, pain in the left ear, down neck. (all began with the surgical removal of wisdom teeth, 12 plus yrs ago) and blood pressure probs. -------- since surgery 'exploratory and the clean out' = body temps stabilized, wb count etc is normal, bps have improved, swellings gone, have numbness and odd strange sensations orally facially but not the bone pain..etc as before. face has settled down, feeling a lot better heal wise with more energy. nothing was found >>pathology. some believed I had NICO or something like osteomylilitis. Dermatologist saw it to be something like an atypical melkersson-rosenthal reaction/ a chain reaction. ? strep-related. StoryName: Allison I was diagnosed this morning with TN, along with many other condyle problems. I am only 22 years old. I had run across this website before, completely by accident, so I knew where to go when the doctor called with my diagnosis. Last year my dentist ran a regular panoramic X-ray just because he didn't have one on file. He noticed my left condyle looked much smaller than the right. He said it may be that I was born that way, but it may also be a problem that needs to be checked. He didn't feel qualified to deal with it so he recommended an oral surgeon. My mother happens to work for an oral surgeon in Dallas so I called her and told her what the dentist had said. She was concerned and began digging up old X-rays and records from the two orthodontists I had seen since I was 6 and had braces for the first time. We got a good X-ray history together and discovered the condyle had been reabsorbing over the last 10 years. For the past year I have been seeing an oral surgeon in Kansas and had several MRIs and CT scans and tons of X-rays. The surgeon said the only real option was costocondiograph surgery, and that wasn't a good option. He recommended waiting until I was in pain and the surgery was really necessary. I wasn't comfortable with that, so yesterday I got a second opinion with a great pain specialist in Dallas. So far I am not in much pain, only occasionally on the right side. I don't even take any medication. The specialist called back this morning with 12 diagnoses, one of them being TN. I also have condyle matriculation, a dislocated condyle, sleep apnea, and many other things. Though I am not in much pain now I may be someday. I do have trouble sleeping, shooting occasional pains in my right jaw, occasional brief locking of the jaw, and lots of severe headaches. The specialist has recommended splint therapy as an alternative to surgery and I think I will try that first. I'd like to hear from anyone with similar problems or anyone who has gone through splint therapy. I'm only 22 and this is pretty scary since I am so young. I have a long time to deal with this. I have read some of the other stories on this website and there isn't much to look forward to. I'm going to get involved in my local TN support group, it seems like it might be helpful. Name: Cathy I was diagnosed with TN over a year ago. I had been to several doctors who mis-diagnosed me with everything from absessed teeth to tumors. Finally I went to a dentist who discovered I had TN. The pain is nothing you can discribe to someone who hasn't experienced it. I was put on tegretol and it relieved the pain. I also went through four months on acupuncture which I gave up because I found it very uncomfortable. Finally the pain left. I was free for almost a year - no drugs and no pain. Three night ago I had a terrible flare-up. I was awake all night, pacing the floor, holding an ice bag to my face. Now I am back on the tegretol and trying not to cry. I thought it was gone. I find it so hard to tell people what the pain is like. They think you are full of crap. Nothing can hurt that much. Well, when I read that TN has been described as "the worst pain known in medical history", I believe it. The attacks are so severe that I feel like ripping my jaw off. Thank you for the support. The tegretol is working for the time being. I don't know what the future brings. It is scary. Name: Cheryl My symptoms began in May of 2001. I had recently had veneer caps on my front teeth. Thought the pain was connected to that but dentist says no. Since then I have had physical therapy, chiropractic care, numerous tests...mri and angiograms. After eliminating everything life threatening, I am left with the pain and the neurologist I am seeing is treating me for migraines but nothing is helping me. I started out having the electrical shock type pains and it progressed from there to pain in the back right side of my head and neck, pain in my cheek and jaw,numbness around my mouth,teeth and gum pain and tingling down my right arm. I have had some horrendous pain to deal with and it has been every day for one and a half years. Nothing takes the pain away for more than about four hours. This has become extremely dibilitating and I am unable to do my job or function except for a few hours after I wake up. The remaining time I am on the couch with an icepack which seems to help comfort the pain a bit. Does acupressure help? I haven't tried that yet. I have tried massage therapy but it only helps for a few hours right after.
Name: "Relieved" I was diagnosed with TN about 4 years ago after having root canals, teeth pulled, etc... Finally, an ear, nose, and throat specialist diagnosed me correctly. I was in so much pain and needed such a high dose of tegretol that I was in a constant stupor. The shocks of pain were so bad that after a bolt of pain went from my jaw to my brain my whole right side would seem shocked for a while. Also, Tegretol seriously affected my short term memory - and the longer I was on it the more I needed. I tried acupuncture. It did give good results at first, but the results did not last. Finally, I read about the Gamma Knife treatment on the web. I scheduled a consult on a Tuesday and had the procedure on a Friday. The Gamma Knife saved my life!!! Immediately I could brush my teeth, wash my face and brush my hair again. Over about 6 months after the procedure the pain lessened and lessened. Now I would say it is about 95% gone. Name: YOLANDA SOY DE NACIONALIDAD MEXICANA NO SE ESCRIBIR INGLES QUISIERA QUE SI AHI PERSONAS QUE ESCRIBAN EL ESPANOL POR FAVOR QUE ME ESCRIBAN, TENGO DOS ANOS CON ESTA TERRIBLE ENFERMEDA Y NO SE QUE HACER SIENTO QUE NE ESTOY VOLVIENDO LOCA LAS MEDECINAS CON EL TIEMPO QUE ESTA PASANDO YA NO ME AYUDAN Y MENOS CUANDO TENGO REMISIONES NADA ME AYUDA PUEDO TOMARME TODAS LAS MEDICINAS DE MUNDO Y NADA ME CONTROLA ESTE TERRIBLE DOLOR, YA NO SE QUE HACER ME ENCUNTRO DESESPERADA QUICIERA QUE ALGUIEN ME ESCRIBIERA PARA PODER ABLAR SOBRE ESTA TERRIBLE ENFERMEDAD.
Name: wayne started on the left side of my face about 10 years ago after root canal therapy. saw a number of dentists all said its not the tooth, had root therapy again to make sure. had symptoms of burning/stabbing pain radiating up and down the left side of my face and lower jaw -trigered especially by eating, brushing teeth, touching above my top lip, kissing, shaving. sometimes the pain would just happen for no apparent reason. referred to a neurosurgeon who diagnosed TN. had scans for abnormalities, given Tegretol which worked but turned me into a zombie, so would only take it when the pain attacks came often otherwise i would ride out the attacks so i could at least keep working. as every one agrees unless u have TN nobody knows how extreme the pain is !! also people tend to think that its just us making it up looking for excuses not to work or sympathy. they have no idea do they !! any way in the last 6 months the pain became my constant companion 24/7 sleeping about 1/2 an hour at a time waking in agony. this i believe came about because i got hit in the head with a metal chair in a pub fight. tried Baclofen and Clonazepam didnt like the side effects ( over the years ive tried acupuncture, amalgams removed, 3 teeth removed, insides of upper and lower jaw scraped for osteitis, novacaine injections into scars and tatoos, also into main facial nerve exit points (theory about nerve interference points)local anathestic intravenously given- ALL OF THESE WORKED FOR VARYING LENGTHS OF TIME which was a tremendous relief- but the evil would reappear at the most unexpected times making me depressed, tired, angry, frustrated, unclear in making decisions and sometimes suicidal. One day i discovered that taking 'speed' jacked me up so that i didnt notice the pain. it worked alright in that it allowed me to carry on working but in the end i was taking so much so often that it severely affected my cognitive skills and every one noticed how my personality had changed. 'speed ' is not the long term answer either !. the specialist i had been referred to (Professor Colbatch)at Prince of Wales Hospital, Randwick and I had a long discussion about surgical intervention as a last resort. i now was at my wits end and agreed to go for MVD. he then referred me to Dr Marcus Stoodley, teaching neurosurgeon at NSW University, who would be performing the operation. my meeting with him at Prince of Wales Private Hospital to discuss the pros and cons of MVD turned out to be a confidence booster. he of course told me about the risks such as damage to my hearing nerve, fluid leakage etc and the fact that even though i presented with the symptoms of TN there were no guarantees that they would find an offending blood vessel affecting the nerves as they exit the brain stem. he said that scans dont usually show such abnormalities either. he explained that he uses a slightly different technique which causes less disturbance to brain tissue and that he has had very good results in the past. apparently he teaches other neurosurgeons MVD and in fact after my operation was going on a teaching assignment to NZ. well i said id had enough of having almost no quality of life so book me in. i had the operation about a week later at Dalcross Private Hospital as it has a brand new Neurosurgical theatre. i woke up and knew immediately that it had been successful. Dr Stoodley saw me soon after i was concious and remarked that they found an offending blood vessel 'jamming hard'against the nerve and that they took extra care to untangle and move the vessel as far away as possible. he rubbed his fingers next to my ear to check my hearing (they monitor hearing nerve during the course of the operation)and i could hear perfectly. Dr Stoodley saw me every day that i was in hospital and i cant speak more highly of his skill and care. i shook his hand and thanked him for giving me back my life. the joy of eating food and savouring the complexity of taste without pain crashing in and destroying the flavours. the first long hot shower and letting water cascade over my face without trigering agony, shaving freely, the first lingering kiss without fear of spasms of fire. i am now rebuilding my shattered life slowly but surely. as u all know TN does take over your life and leaves very little energy to survive let alone cope with relationships, work and recreation. from the bottom of my heart i wish all my fellow sufferers all the best in their quest for relief in this world whatever it may be. dont give up hope, and ride out that cyclone of raging pain until the day dawns when it has been vanquished !! ONLY WE HAVING TN FEEL THE BEAST WITHIN RIDING THAT WAVE OF PAIN OTHERS THINKING WE'RE INSANE SAYING "DON'T BE A PUP YOU'RE MAKING IT UP" WE ONLY WISH THEY HAD JUST A LICK SO THEY KNOW HOW IT MAKES US SICK LET THEM WEAR THAT SHOE THEY'D BE SCREAMING TOO LOCKING THEIR JAW AGONY EXQUISTELY RAW ! - BUT ITS SUCH ON ANOTHER I COULDN'T HOPE SO AMONGST US TROOPERS WE WILL GROPE AND FIND THE STRENGTH BEFORE WE'RE SPENT SEARCHING FOR THAT HOLY GRAIL THE CALM PEACEFUL SEA TO SAIL ONCE AGAIN SHARP OF MIND AND FULL OF FUN NO LONGER DEPRESSED AND DUMB THE VACANT GAZE THE WORLD A CONSTANT HAZE THEN EVERY MOMENT OF LIFE I WILL SEIZE AND MAXIMUM PLEASURE FROM IT SQUEEZE PLEASE PLEASE PLEASE RELEASE ME FROM THIS DISEASE !!!
Name: Antoinette I am so glad to find this site. I have been in severe pain for over two months swallowing up to 20 Tylenol a day, going to the chiropracter, etc. After my doctor put me through several prescriptions for sinus infection, he finally gave me a cortisone shot and penecillan shot. It helped a little, but I was traveling on a 3,000 mile trip and had to go to another doctor my pain was so bad. He told me I had no infection, but all my muscles were tightened up and gave me a pain reliever. That helped a little, but I was still crawling the walls. Finally, my chiropracter, who had done everything he could do told me to get an MRI and ask my doctor about TD. I had never heard of it and looked it up in my doctor book before I went to his office. To my amazement, it completely described all my pain. I told my doctor and he put me on seizure drugs and coedine. I've been in a daze since, but if I don't take them at the prescribed intervals, the pain returns so bad I have to hold on to a table or anything near to get through it. I had an MRI on Friday and am waiting for the results. It's on my right side and right where I had surgery in 1983 for a parasite that got in my eye. The doctor broke through my skull, removed my eye, scraped plaque, and replaced the eye. Since then, I've always had headaches and a few sessions with pain, but nothing like what I'm going through right now. I also get a flush every now and then, right before the pain starts to rear its ugly head. Does anyone else experience this? I'm a mess right now, so I'll sign off. Name: traci d I HAVE HAD SURGERY AT LEAST 10 TIMES. I WAS DIAGNOSED IN 1995. IT TOOK 2 YEARS BEFORE I COULD FIND ANY HELP, IF YOU COULD CALL IT HELP AT ALL. I AM LOOKING FOR PEOPLE WITH NICO TO TALK TO. THIS DISEASE CAN BE VERY FRUSTRATING. I HAVE BEEN TO ONE OF THE BEST DOCTORS IN INDPLS., I HAVE BEEN TO THE DENTAL CLINIC AT THE UNIVERSITY OF KENTUCKY WHICH IS ONE OF THE TOP SCHOOLS IN THE US., I HAVE BEEN TO A PAIN CLINIC, I HAVE BEEN TO IU DENTAL SCHOOL, I HAVE BEEN TO ORAL SURGEONS, ENDODONTISTS AND A HEMOTOLOGIST/ONCOLOGIST. I HAVE LEARNED TO STICK WITH ONE DOCTOR. I WOULD LIKE FOR ANYONE TO CONTACT ME FOR MORAL SUPPORT AND TO UNDERSTAND THIS DISEASE BETTER Name: Deborah was first diagnosed 1 year ago - by an eye doctor. this after 1 year of family doctor & neurologists not being able to diagnose me. i first noticed something about 8 years ago. it started as just a "sensation" on my right side. i thought it was my sinuses so i took alka seltzer cold & allergy. got some relief on the sensation so it just justified my belief in a sinus problem(which i had been prone to anyway). for a few years it was just this "sensation". after 2 years it started turning into an acutal pain that emanated from the back of my head and would last anywhere from 1 day to 3 or 4. i thought this was muscle problems in my neck & back. sought treatment from a chiropractor - to no avail. about 4 years ago it turned into a burning, searing pain in my head - 90% of the time on the right, the other 10% would flare on my left. i would go to the doctor and tell him that i had this pain in my head that was not a headache. and, of course, it would be dismissed out of hand and chalked up to being female. two years ago the pain started triggering migraines. that was when the family doctor finally sent me to a nuerologist, who did all the obligatory testing (cat scan, mri, pinched nerve) and found no reason for my pain. sent me for physical therapy and put me on muscle relaxants, anti-imflammatories & sleeping pills. the pain was still just as intense as if i hadn't taken anything at all. in july of 2001 went for eye exam and the eye doctor said my optic nerve was cupped. he sent me to a nuero-opthamalogist. he prescribed amitryptolene and i got a lot of relief from that for a while. we had to up my dose 3 times and then i had to get a new doc(insurance, you know). the new eye guy has put me on nuerontin. not really seeing any significant change in pain levels on this. have an appointment on 10/17/02. hope he has some better news. this pain is like no other, and if you haven't experienced it you cannot possibly understand. i can take pain anywhere else, but this pain is the worst. mostly because it lasts for soooooo long. it's usually around for 3 or 4 days and builds the entire time until you think your head is going to explode, and then you can wake up the next day and it will be gone. has anyone out there tried acupuncture? today is a bad day for me. i might be headed home shortly to take a sleeping pill to get away from the pain. so glad this forum is available, doc's don't really understand the need for company on stuff like this. Name: "Carol" 10 years ago (I am 48)I developed a horrible pulling and burning sensation deep in the right side of my face. To make a very long story short...I went to every kind of doctor and dentist I could think of to find some kind of relief. I have been seeing a pain specialist who keeps me up to date on new treatments. Interesting fact: My son was suffering from Cox-Sachi(sp) a virus not unlike Chicken Pox when I started getting symptoms. My doctor thinks perhaps I contracted a form of Shingles in my face (although I never had any blisters or markings of any kind) stemming from my son's virus. It's been very difficult to live with this kind of chronic pain, although I have gotten more used to it. I find it is at its worst when I am tense or, strangely, when I'm driving (maybe I'm tense then as well). I am a rather highly-strung person and I know that the calmer I can make myself...the better I feel. I do a series of neck stretches and they help somewhat. My advice to anyone with this disorder is TRY AND RELAX and accept that you have this disorder and quit trying to find out exactly why you have it. That's the road to madness with this kind of thing. Good luck to all of you. Name: "Jaime" StoryTen years ago I suddenly had terrible pains up the side of my face, after dentist, family dr.,Neurologist, I was told I had Trigeminal Neuralgia was placed on medication Tegretol,as time went on I was also taking neurontin, and Dilantin. These all had side effects so I was on for a while, then go off as I hated the results. My Family Doctor put me on Calcium and Magnesium for my bones and imagine my surprise when the pain left my face. This was four months ago and thought some one else might like to try it to see if works for them. Good Luck if any one decides to try it. Jaime Name: Lian I started having a strange, uncomfortable (but not painful at this stage) sensation in one of my front teeth (right side) nearly 2 years ago. It gradually got worse and for the past year and half I have been in almost constant pain - I would descibe it as a burning, ache although when it's at its worst it is sharper and almost unbearable. I have seen my dentist countless times as well as 3 oral specialists. At first I was told it was caused by grinding my teeth at night but a splint/mouthgaurd didn't help at all. Finally my dentist did a root canal filling (about 5 months ago) which didn't help but left my tooth slightly tender when touched. I've been on Amitriptylin fpr the past 3 months but initially only on 20mg. I have steadily increased my dose and am now on 60mg with still no result. The side effects - drowsiness, weight gain especially are becoming intolerable although if they were helping the pain I suppose I would put up with it for a while. I'm intending to go up to the highest recommended dose for this condition which I'm told is 100mg. The last two specialists told me that if the drug works, having stayed on the dose for a couple of months some patients can then stop taking the drug (gradually) and remain painfree - is this true?? I've read the info on this site about Capsaicin and will definitely see if it's available here in the UK and give it a go - if that works it would be far preferable to drugs. My condition seems to differ a great deal to many descriptions posted on this site as eating is the one thing that gives me TOTAL and immediate relief - it's a wonder I don't weigh a ton by now! The other thing that gives me slight relief is CHEWING GUM! I have spent a fortune on the stuff and panic if I haven't got at least one pack with me. I noticed one other person 'Bumblebee' has posted this too (5/28/01). I'd love to hear from anyone that has had similiar experiences to me. Thanks for listening... Name: "ihealnow" I suffered from TN for six years and have been pain free now for 1 year and 9 months. I just wanted to let people know that there are alternatives to dealing with your pain and that it does not have to mean medication or surgery. I tried all of the medications. I had two root canals and was determined to get a third one when my dentist finally suggested I see a root canal specialist who informed me that my teeth and roots were fine. He suggested I see a dentist who was also a medical dr. Luckily for me, he was very sympathetic to my pain (first step to healing ) and was treating many paitents with TN. I didn't have insurance or much money to spend on meds, so he didn't charge me for my visits. But it finally came to a point where the meds were not working either, tegratol, neutrotin, elavil, and he suggested I see a neurologist who gave me free samples of vioxx. I was so disgusted by that time, I refused to take the vioxx - moved to CA - for change and tried to deal with the pain with out medication. I came to the conclusion that stress for me was a great instigator in this illness and that I would try to do whatever I could on my own to heal my body and learn to deal with the stress. Walking always seemed to make a difference and I noticed when I didn't walk, the attacks would be worse . Any kind of stress seemed to make it worse. I believe, that my TN was brought about by a virus attached to a cold that somehow attached itself to the trigemina nerve and it was left impaired. Of course, my immune system was already vunerable after a series of very stressfull incidents over the course of several years. I decided to spend all of my efforts ,every possible minute of the day even when working, on healing myself. I had a hypnosois session and listened to a tape every night before bed. I took up power yoga daily for 9 months. I took a powerful multi-vitamin and extra vitamin "C" and "E". Since I could not eat any citrus, I knew I wasn't getting the nutrition I needed. Vitamin "C" is a powerfully healing catalyst. I started an herbal suplement for peri-menopause. And I started seeing a therapist for anxiety. Expensive, but worth it. After about 6 months, I noticed a tremendous difference but I did not believe yet that it was working . So, I continued to focus on the formula and not the pain. I discovered that focusing on the pain only makes it worse. Focusing on anything else helps tremendously. I chanted affirmations to myself when walking and at work. "I am healing as we we speak" , "I believe the mind heals" . Simple, but effective. I also became involved in other things . I joined a gourmet cooking club, and I became a member of women's group, even while I had the pain. I felt very self-conscious as times, but usually , I've found, people don't even realize you are in extreme pain, unless you tell them. I realize that when you are suffering from TN pain, these suggestions probably sound trivial compared to your pain. Belive me, I UNDERSTAND. I was forced to try these remedies, because I could not afford medications and I did not have insurance. I knew that these were positive changes and that if nothing else they would get my mind off the pain. I also knew I hated the idea on being on medication for the rest of my life. Learn everything you can about TN , pain issues and stress. Anything related to TN - migraines, the trigemina nerve, read, read, read. Find someone , even if you have to pay them, to listen to you. Find ways to keep your positive attitude working. Take less of the medications. For me, the medications simply masked the pain, they did not treat the cause. Find ways to DISTRACT yourself. FOCUS on helping someone or anything else. It works. And most of all, find positive ways to be good to yourself, even if it is just a bowl of your favorite warm soup. Hope this helps for all of you TN sufferers, I do sympathize. BE WELL. - Thanks for listening. And many thanks for setting up a place where people can talk about TN. It is still such a mysterious disease.Name: John After suffering Trigeminal Neuralgia intermittently for 5 or 6 years, the pain invaded the right side of my face without relief for 6 months Treatment with drugs were to no avail. A visit with Doctor Rob Parrish, neurosurgeon, explained the procedure by Dr Peter J. Jennetta. I should explain, I am 79 years old and in good health After extensive heart tests, Dr. Parrish agreed to perform a Microvascular Decompression. I went into the operating room with intense pain and came out pain free. My stay in the hospital was 4 days however, a gastric upset forced my return for an additional 4 days. It is now 2 months later and I am pain free. .. Name: cheree Im in desperation of help from this suicidal pain.I cant live life like this,the pain noone understands,doctors look at me as if its in my imagination.They dont know how to help,only to ply me full of drugs.They leave me like a zombie,i cant drive with them and i cant have a normal relationship with my husband.I have had this pain for nearly 2years attacking me for 2months and then going as quickly as it came.Currently Im on my 4th week of agony,electricity sears through my teeth no person should have to suffer this agony.If I were an animal i would receive better treatment . Name: "Dee" I am writing on behalf of my mother. She has been suffering with pain on the left side of her face for approx. 6 years. We're not sure but we think it might have been triggered by a car accident, although we just recently learned that Prilosec, which she has been on for about 7 years does not allow the B vitamins from foods to be absorbed into the body. Therefore you must take supplements which are absorbed while taking Prilosec. I mention this because the B vitamins help in maintaining the covering over the nerves, therefore this might be part, if not the cause of the neuralgia problem. Approx. 2 months ago she began having the worse crisis ever. She would spend nights having spasms ever 5 minutes. Needless to say she was desperate, depressed and nervous. I must say that over the past few years she has gone to many doctors, has had teeth removed, has been diagnosed with TMJ, depression, burning mouth syndrome, etc. Going back to 2 months ago, we began praying that the Lord would lead us to the healing He wanted. Long story short we feel He lead us to a chiropractor and a massage therapist and she began feeling relief. She has had three setbacks, which we now know it is due to being out in the heat (90 - 100 degrees lately where we live). She just went to a specialist to get another opinion - he said that he believes she has facial neuralgia and he recommended we go to a neurologist. However, he also said that one direction that the neuro might take is physical therapy, which she is already doing and seems to be helping. He spoke about the operations and medications - but also said that the medications have many side affects. The chiropractor, who does accupressure and msg. therapist are working for mom. Please know that one thing the massage therapist has revealed is that the pain does not originate with the face. Sometimes when she presses or massages certain muscles in the back or puts pressure on the toes my mom, at that moment, has had pain shoot out her jaw. It appears to be a "whole body/nerve thing." Another interesting incident is that chemicals seem to also trigger her pain (in addition to being out in the heat). Stress is also a trigger - the other day she was feeling fine and was involved in a situation where she became angry and she told me that at that moment she immediately felt pain - once she calmed down the pain went away. I've heard many horror stories about the operations and medications that are out there. My hope is that many of you try to go towards a more natural method of healing. I realize that the pain many times does not allow you to think clearly or care for that matter, but please try. One final tid-bit - please know that my mother has begun taking liquid B-complex and calcium/magnesium (helps eliminate spasms) and I believe this in addition to the physical therapy has helped her. God bless you. Name: Aldora I have been suffering with terrible pain in my right jaw for the past six months, the result of the extraction of a wisdom tooth. I have heard that this is a possible consequence of damage to the nerve, and that is what has happened to me. I could not eat, talk or do anything that involved my moving my tongue. Just touching my chin brought excruciating pains. My life cam to a standstill and the only way I could eat was to drink thru a straw pushed way down my throat. Then, something happened wwhich is so simple I could hardly believe it ... I looked up to watch the Perseid meteor showers a few weeks ago, and when I came in, my jaw felt a tiny bit better. I tried looking up and flexing my jaw musc;es on the right side, and kept doing it every hour or so. By the following day, the pain had become a fit duller. I continued to looke up and strecth the muscles every hour or so for the next few days, and gradually was able to talk, eat and even sleep in my right side again. I have been mmuch improved ever since, even able to resume my social life . I now believe that the pain is aggravated by the jaw muscles tightening up, and the more pain, the tighter they get. Some of the drugs given for relief are anti-convulsive drugs given to rrelieve epilectic seizures, and I think that the reason they may give relief it because they relax the facial muscles. I hope that anyone suffering as I was can be helped by this simple action. It does not eliminate all pain , but it does help to the point where one can resume control and live a bit more normally. I have been in relief for several weeks now, so I do not believe that my good fortune is due to a spontaneous remission of pain, but rather to my simple jaw flexing. If this helps nnyone else I would be pleased to hear from them. Name: DAVE I am a 54 year old computer programmer. In July 2001 I went to a dentist to have a cavity filled. It was the rearmost molar on the bottom left of my jaw. The dentist said it was a deep cavity and it "may require root canal" but he drilled and filled it . At that time he told me that it might hurt for a while because it would take a long time for nerves to die. A few days later I began to have pain along my left cheekbone under my eye. The pain continued and got worse. I took tylenol and advil and asprin but they did not help much. For a while all I did was go to work and come home and put a hot pack on my face and try to sleep. In September 2001 I went to another dentist who tested my teeth for sensitivity and he found no problems . In October I went to an ophthalmologist and got new glasses because I had been putting in a lot of time a work looking at the computer screen and I thought I might have an eye problem. The new glasses didn't help. I made an appointment with my physician who examined me and sent me for a CAT scan which was negative. At this point I had a pain with no diagnosis. In November I went to an acupuncturist who is Chinese and has her MD from China. After my first treatment ( which is much less uncomfortable than having a tooth cleaning for instance), my face pain dramatically decreased. I greatly recommend trying acupuncture for this problem. She also suggested I look at the Internet for trigeminal neuralgia , giving me a name for this disorder. Now, nine months later, the intense pain I felt originally has not returned but has settled into a chronic condition. I still get pain and swelling underneath my eye after staring at the computer screen for a length of time . I have minimized the time I spend at home looking at my home computer, and reading, and watching television. And I do not sleep on my left side because of the sensitivity underneath my left eye. I've gone back to my physician who is referring me to a neurologist to see if any further progress could be made ;but I am reluctant to try anything too drastic because I am afraid of the intense pain that I had originally returning. At any rate I recommend giving acupuncture a try ; just inquire as much as possible about your local acupuncturist's reputation before making an appointment. Name: Denny I am 66 years old & a white singe male. I had a stroke way back in 1978 & many small strokes since then up to the present time. About 4 years ago I developed a severe intermittent pain in my upper left jaw bone. I went to a doctor at our local hospital & he "pulverized" the jaw bone & it cured most of the pain. I am going back to the doctor that ground my bone to grind a little more or another bone that controls the jaw this Wednesday, August 14, 2002. I am hoping that grinding the bone will cure my slightly sore spot on my chin. The reason for grinding the bone is because the brain sends a "ouch" signal down to the upper left cheek bone & with the section of the bone pulverized the pain doesn`t go any further there by I DON`T FEEL IT!!! The doctor deadened the left upper cheek & then he ground with a small electric medical drill to pulverize the bone. He done this right in his office. It took only 15 minutes & I was done. I am cured of any pain now!!!! It is a pleasure now having no pain when I eat.... Denny Name: Lisa My TN was never as debilitating as some of the stories I've read here, but was quite painful, nonetheless. My GP diagnosed and treated it successfully with Amitriptyline for several years, but it became unbearable around the summer of 2000. I tried Tegretol for a while, and it seemed to help, but ultimately I opted for the rhizotomy procedure. I had the procedure in February 2001, and it was a breeze! The numbness has taken some getting used to, but there's no question it's better than the alternative. It's actually not that numb at all--it feels like I had novocaine and it never wore off completely. I still have the pains occasionally (I call them cattle prods), but it's nothing I can't live with fairly comfortably. If it gets worse, I won't hesitate to have the procedure again. I highly recommend it as an alternative to major, invasive surgery. Best of luck to all of you--I hope you find relief from your pain as I have. Name: Paul Having facial pain now for around three years, I am unsure what to do next. Two years ago, desperate to cure this, I had four teeth removed over a twelve month period. The pain just moved elsewhere, but has always been solely on the right side of my face. The pain is triggered by the slightest touch, which makes brushing my teeth a nightmare. The slightest mild breeze also sets the pain off. It seems far worse on waking in the morning, but it never goes away. Most days it is irritating enough to make me feel totally fed-up. It just feels like half of my face is on fire, and sometimes the pain goes down to my upper right arm (probably deffered pain) I went to the doctor (on the National Health Service), and have been prescribed Tegretol (Carbamazepine) now for the last six months. I had the best night's sleep ever after taking these pills for the first time, but now am so used to taking them that I think I have developed a sort of immunity to them. Although I am only on 600mg a day, and have been told that people are on higher doses. I feel I am now back to square one. Diagnosis: TRIGEMINAL NEURALGIA Prognosis: Just keep taking the pills and hope it 'clears up' I now have a good dentist, but all their X-rays reveal no dental problems, and so their treatment of me has now come to an end, apart of course from the obligatory check-ups. I was referred to a specialist, but when I mentioned that I had been recently suffering from depression, I lost all credibility as a genuine 'suffering' patient, and was told the problem just should 'get better' with time. Until this recent episode, I have never suffered from depression in my entire life, I have always been reasonably happy. But this constant pain has had a negative effect on me, and certainly caused depression over the last two years. So I had a short two-month period taking Dothiepin tablets for two months last year. (just 75mg before bedtime) They had no effect, so I stopped taking them. So what can I do next? I have learnt to tolerate pain, but it has robbed me of my zest for life, and genuine happiness is just a distant memory. I don't laugh anymore, and smiling seems to hurt. I have lost my self-confidence, many of my friends, and my motivation to do things, and the sad thing is that I am not yet thirty years old. I am fortunate enough to have a reasonable job in IT support in education, but I am now having serious trouble performing my duties, concentrating and thinking straight, or even tryng to avoid being sharp or rude with people because of the pain. I just hope I can continue to hold the job down. I thank this site for finally being able to write about my problem, although it scares me to do it. I makes me feel somehow better to know that I am not alone, and other people know what this feels like. I tried to sweep this problem under the carpet, and hope it would eventually go away. Now it is time for me to stand up to this problem, and learn to deal with it. If nothing else I consider myself strong willed, and refuse to give up hope, even after three years of constant suffering. This is certainly a 'character building' experience. Name: "Nell" I have found great relief from TN pain by seeing a massage therapist for Trigger Point Massage. I know it's a non-traditional approach to TN, but I wanted an alternative to strong drugs and surgery. This reflects my nature, as I have a juicer, take natural vitamins, try to seek alternative treatments, when possible. I do not wish to offend anyone who has gone a more traditional route. Through the years,I have been to many Health and Nutrition classes, so my thinking goes in an alternative direction regarding drugs and surgeries, which are, of course, sometimes necessary. The first onsalught with TN came in April 2002. So much has gone on but it began with a trip to my dentist. My upper right molar was hurting and sensitive to temperature. The bottom tooth needed a new filling and dentist suggested referred pain. She also ordered a consult with oral surgeon. I am 51 years old and still have my wisdom teeth. It took weeks to get in with oral surgeon. Also,I had been awaking, in morning, with dull headaches, off and on for months. I do not have trouble sleeping, in fact I enjoy blessed sleep, so I wasn't sure why I kept having these morning headaches. My new husband, of two years, isn't well, I suspect Parkinson's Disease. He refuses to see a doctor and has severe mood swings. There is a huge amount of stress at home, so I attributed the headaches to stress. In April I had two episodes of blurred vision, one while I was driving. This scared me. I went to Doctor's office and was seen by a PA. He was very kind and concerned. He wasn't sure what was wrong but wanted to rule out a brain tumor or anuerysm and he ordered a CT Scan. I also was having some face pain. He thought I might have Temporal Arteritis, so ordered a SED rate. Before I got to the CT scan, I ended up in ER. The headache got bad one night, I felt as if my head were in a vice, squeezing on each side of forehead. Then I had face pain down right side of face. This scared me also. Some things were ruled out. It wasn't diabtes, and my SED rate was good so it wasn't temporal arteritis. There was question of menopausal headaches. Could be stress. I left with samples of Celebrex, with no diagnosis and was no better. I took it for a short while. I marvel at the wonders of technology, though I didn't want a computer in my home for a long time. The pain had continued to worsen and there had to be an explanation. Being a woman of faith, I did a lot of praying. Suddenly I remembered this man whom my parents had known. He had tic de loureaux. I wondered if I could have that condition, about which I knew very little. God is faithful and led me along the way. That's when I got onto the computer and researched tic de loureaux and facial pain. Basically, I diagnosed myself before I saw the MD. I had the horrible pain in face, mouth area, teeth, gums. I went through with the CT scan, and it was normal, thank the Lord. I saw the MD the same day. He agreed it was TN, although he had very little knowledge of TN and put me on Neurontin. I didn't want to take it. My girlfriend was attending a Massage School nearby. She suggested that I see her instructor, who specializes in the nerves and muscles of the face and neck. He and I talked on phone and his theory was that, due to stress, the muscles were entrapping the trigeminal nerve. Prior to knowing about the Massage Therapist, I had paryed to God to show me what was aggravating the nerve and causing pain. This man was an answer to prayer. He was kind, knowledgable, and I felt safe. He showed me diagrams, pictures, explained his theory and then did some gentle trigger point massage on my neck muscles. One was as tight as a rope. I felt IMMEDIATE RELIEF. After the first treatment, I had NO PAIN. He taught me how to do some trigger point massage and some Feldenkrais Movement techniques, which are gentle movements which are beneficial to spine, synapses and help one to relax. I went back again, but was not in bad shape. He asked me to share my story with his class. I went from April to June without pain. I have made a definite link to stress and TN pain. As I said, our home life is very stressful, not just everyday stress, but stress that cuts to the heart. I can pinpoint episodes that set off the nerve pain. I have been back to massage therapists for treatments and am trying to manage the stress level at home. If my husband doesn't get help, the children and I will have to leave. When I am away from the house, and the cloud he has over it, I feel better. When I'm in the company of happy, positive people, I feel better. One day I had face pain. I visited some dear, longtime friends. We laughed, looked at photos, etc. The pain vanished. Another time, I was fine until I got ready to return home. The pain began. This has happened at least twice lately. When my husband gets angry, my face hurts. How many others can directly link stress and TN pain? I have been so debilitated this week that the thought of moving is more than I can deal with right now. I have no money and I have much pain, this time in my tooth. Even after the relief from massage, my upper right molar always has a twinge of pain. Now I have been fighting an infection in gum, have been on three antibiotics and been back to dentist and oral surgeon. I a presently on clindamycin. I reacted to erythromycin, and penicillin didn't touch infection. What I want to know is can TN cause an abscess? I have had drainage in my mouth for over a week. My initial consult with oral surgeon, last spring, showed the wisdom teeth were impacted but fine. He still isn't ready to remove a wisdom tooth. Now I must see an endodontist. I have this infection and am concerned about a heart condition, with which I was born. Why do I have an infection? Is the TN the culprit? Could the swelling from tooth be causing the TN? Please advise if you've had an infection in gum. Although I still get TN pain, I know the trigger point massage will minimize or remove the pain. I do take Ibuprofen, but it hurts my stomach so then I go to Acetamenophen. I have never taken Neurontin. I will be happy to share with anyone who is interested in trigger point massage. Do yourself a favor and give it a try. Also, try to minimize stress in your life; easier said than done. Who ever knew that such pain could exist with TN? Thank you for the opportunity to share and learn from this site. Does any one have alternative treatments that reduce pain? Thanks. Name: Jill I wrote a rather lengthy account of my experience with TN back in April and wanted to update it a bit. Someone by the name of Dusty sent me information via this site about trying the drug, Amerge, which she had had success using. The drug was meant for the treatment of migraine pain, but the leaflet said the drug was shown to inhibit trigeminal nerve activity. I want to thank Dusty for passing this information along to me. I brought it to my doctor's attention and have been undergoing a drug trial on it for the past month. I did have a ten-day window of no spasms, but then they returned. I'm continuing on the drug at a higher dose to see if that pain-free window was related to Amerge. It's worth a shot. In the meantime, I continue on long-term disability and lost my job on May 1st as a result. Today, I had two heart-stopping jolts which drained me of energy. Eating is like walking through a mine field, but most of you know this. I continue to take 1200 mg. of Trileptal a day and feel that this drug keeps me alive; it does protect me from the worst of the pain, but leaves me feeling very sedated; and I'm starting to experience more disturbing side effects: hand tremors and loss of coordination. Doesn't matter. It beats dealing with the agony. I see a counselor bi-weekly, who specializes in chronic pain and disease. He has never dealt with TN before - and seems at a loss for how to support me. But he tries, and I do feel heard and validated. I don't regret having the MVD surgery back in January, even though it was a failure. I now know the complexity of the nerve and artery pathway and why my neurosurgeon couldn't see the area under the skull. He did his best. My husband and I are selling our house to downsize our bills and maintenance to make it easier for both of us to live with my TN. There's a very surreal quality to it all - and a sobering reminder of how one's Life Journey can change in a heartbeat...or a jolt of pain. Still, I keep choosing life, and I hope you all do, too. Hang on, because the pain MATTERS. For whatever unknown reason, I believe it matters and pricks us - and the public out there who haven't experienced it - into a whole new level of awareness. I wouldn't choose this. None of us would. But boy, do I appreciate every hour I get through, pain-free. Hearing all of your stories is affirming, too. There is much to be said for knowing you're not alone when suffering. Thank you for writing your own experiences and for listening to mine. And thank YOU, Dusty, wherever you are. Blessed be. Name: "Shauna" Name: Sherrie I finally got to have this operation earlier this year - after 9 years of attacks. Shortly before I went into hospital, my consultant neuro-surgeon's registrar told my GP to put me on GABAPENTIN (300 mg tablets: start on 2 and work upwards until the pains stopped). I'd already been tried on carbamazepine but was rushed into hospital with a bad liver disease (which both my husband and I feel was caused by the tablets). Despite the operation, I had to stay on 4 of the Gabapentin and despite both the operation and tablets, I have had several bad TN attacks. I'm currently on 5 tablets and feel lousy. Is there anyone else who had a 'failed' operation and, if so, what did you do? Please help: I feel life is now passing me by and I can't take part in it. Name: CJ Unfortunately my TN is the product of a congenital neurovascular disorder. As a result the vessels that were cleared in the TN area grew back after each decompression. I also had 2 dorsal column stimulator implants. The 1st worked well but I developed an infection, most probably the result of another surgery, and had to have it removed. It was replaced only to be lost again to an infection, (trhis one I believe the result of close contact with a person who had a severe infection.) Infection, as I understand, is an uncommon occurrance. Tegretol was awful the 1st time I tried it and no help. It was tried again 3 more times with the spontaneous pains and constant pain helped greatly. Unfortunately my white count plummeted (there was a question of whether was the drug or maybe I had a virus.) Hypnotherapy and acupuncture were of no help (altho the hypnosis was enjoyable.) I became toxic from lithium and was allergic to the liquid opium. I was also tried on vasodilators, psychotrophics,other narcotics, including methadone (no help but only drug where I experienced withdrawal after only a week.) I spent about a month in a pain clinic which was nice but of no help. Most, if not all, seem to be geared to those with pain below the neck that may respond to PT. I am currently with a (R) cortical brain stimulator. I believe it is helping. I underwent a thermocoagulation rhizolysis which left me with an anaesthetic cornea, AD, loss of taste in (L) mouth and tongue, TN in v3, which was not present prior to procedure. and numbness of the entire (L) face. A marcaine rhizolysis did not help or hurt. The first decompression got rid of the pain 99.9%. Unfortunately it returned in the same spontanrous lightning 3 months later. A Jannetta procedure performed by Dr. Jannetta. left me with a 100% facial paralysis. It relented minimally so that I remain with a partial permanent facial paralysism, helped by repeated face and brow lifts, botox injections, fat injections, etc. I must warn you that, despite my paralysis and repeated requests to Dr, Jannetta to add the known risk of partial permanent facial paralysis to his texts, chapters, and website information, he has refused to do so. This refusal is in contrast to his statements in 2 depositions that; "Facial paralysis is a major and common complication of which I invariably inform my patients." (In court, under oath he changed his sworn testimony saying; "(Facial paralysis)is...unknown complication.") The 3rd decompression procedure was in the summer and I cannot say whether the benefit was from the better weather or from the surgery. A trigeminal tractotomy stopped the spontaneous pains for 5 years. I am currently considering, maybe, a morphine pump. I am not a zealot and everyone has their own beliefs but the stopping of the constand pain and touch initiated pain occurred through a Miracle. My neurosurgeon, ophthalmologist, neurologist, and head of hypnbotherapy clinic also believe it is the resultof a miracle. I was ready to suicide and had the bottle of pills in my hand. I felt 'compelled' to go to couch and do an hypnosis. I did not know why but went and lay on couch anyway. I put myself into trance and the words came into my head (I did not hear a Voice) that "your brain needs to remember that the (L) fifth nerve is totally and completely dead." I repeated this instruction to my brain and came up from trance about 20 minutes later. When I did, I found that I could touch the (L) side of my face and there was no pain at all. This was the day before Thanksgiving, November 3 years ago. The touch pain, spontaneous pain, and constant pain has never returned (unklike it did after each helpful procedure. If you do hypnotherapy you probably do it or know it as a 'glove anaesthesia' or addressing the pain directly. Instructing the brain directly is not a known, to my knowledge, way to do the therapy. Dr. Margolis, of Jefferson Hypnotherapy, agreed and said that they had thought of doing something similar but a direct instruction to the brain different from the usual way of doing pain reduction hypnotherapy. I do remain with eye movement pain which continues to keep me from working. I am still looking for the answer to that pain. Sorry for the length. Thank you for reading this. Name: Carmen It started about a year and a half ago around Thanksgiving. It was an awful holiday for me because it hurt to talk, eat, laugh and all my kids were home. I was diagnosed with TN and the first medication she gave me I was allergic to, so she switched me to neurontin and it was like in remission until this Nov. I had a very mild comeback and then it disappeared again. I was fine until April and it started rearing its ugly head again. It wasn't too bad until June and I have had pain every day in June and July. I went back to my neurologist - was in her office for about 45 min., took my blood pressure and did a few other little things - she told me to take another pill every day and charged me over $200. Well, it's not working - I wish there was something else I could do. She did not recommend any of the surgeries. It hasn't been a very pleasant summer. I just want it to go away and stay away. Name: Carla My husband was only diagnosed last month with TN. It has progressed to Atypical TN and tho' he originally responded to Tegretol, it does not seem to be helping much at this point despite playing with the dosages. We have a great doctor and were lucky that the diagnosis was made after only a couple of weeks of symptoms (tho' hubby did consider major teeth pullage in a effort to stop the pain at the onset). Can you believe that once I finally convinced my husband to see our GP for the pain, the doctor had it nailed within an hour? It's kind of funny, but due to a dental insurance snafu, my husband only had a quick dental exam and x-ray. If he had had full insurance at the time there is no telling what sort of procedures he would have suffered through to relieve the pain! The dentist prescribed him an antibiotic just in case he had a deep absess (despite the fact he had no fever and no redness/swelling). So, when we went to our GP we had already ruled out a lot of the possibilities for him. Our doctor is a teaching doctor at UAB Hospital, the bestest of the best hospital in Alabama. Dr. Akhtar pulled out his books and reference guides and easily diagnosed the TN. Lucky, hunh? We spent the next couple of hours in a state of shock as we had convinced ourselves that he was having tooth and jaw problems and was only going to get some sort of pain reliever until his dental insurance kicked in the next week. We then started making horrible jokes with our waiter at dinner about my husband's horrible "brain boo boo". =sigh= I am afraid that as this thing has progressed, the effectiveness of the meds has lessened and we have lost our sense of humor. What has me worried just as much as his constant pain is the fact that this damned thing has changed him from a wonderful, patient loving man to a snappy, short tempered recluse. I have been so worried that I have sunk into a deep depression and had a week of severe panic attacks where I was unable to cope with life in general. Please, can spouses/partners contact me? I guess I just really need to talk to someone that is going through the same things we are. I am finding lots on how the patient copes and stuff, but nothing about the ones that have to libe with the "pained one". I want to be there for him, but am so freakin' worried that I can't cope with anything. Um....help? Thanks! Carla =^..^= Name: Brennen My ear problems started when I was about 16 years old. When my ears got cold they would HURT like the devil. I just wore earplugs and if that wasn't enough I would put on ear muffs. A few months ago my right ear started to hurt all the time. I made the mistake of seeing a nuro that prescribed me Tegretol while at the same time telling my GP that I'm mental. What happened was a nightmare. As I increased the dose of Tegretol I started to get pain in my face. I thought nothing of it and continued to increase the dose. After one month being on Tegretol I was in horrible pain in my face and neck area. I went to my GP to ask him what in heck is going on. He got very mad and said "see a shrink" then he threw me out of his office. It was a very cold day and I had to walk home. That night I was in such pain I almost slashed my wrists. I now have a face that is VERY sensitive to cold. I am now on Nurontin and nortryptiline trying to control the horrible burning and aching pain. I didn't see a doctor for months after that GP. I HATE doctors !!! I saw a nuro that told me I wouldn't be in pain if I had a job. I almost screamed at him at the top of my lungs. "JOB? I CAN'T OPEN A WINDOW IN MY HOUSE WITHOUT MY FACE TURNING TO FIRE !!!!" I'm getting help now from people who give a damm. Thank god for support groups. Name: KRISTY HI, I HAD WRITTEN MAYBE 2 YRS AGO AND SHARED MY STORY AND READ SEVERAL OF THE STORIES ON THIS SITE. I WOULD SAY THAT I WAS TYPICAL BUT WHEN I GOT UP TO TAKING 10 PILLS A DAY OF 400 MG OF NEURONTIN AND HAD LOST 15 POUNDS AND WAS HUNGRY AND IN ALOT PAIN I ASKED MY NEUROLOGIST IF THERE WAS SOMETHING TO BE DONE TO END THE PAIN AND PILLS. I WAS REFERRED TO A NEUROSURGEON AND SHE DID A PROCEDURE ON ME CALLED, "MICRO VASCULAR DECOMPRESSION" I WAS IN HOSPITAL ONLY 3 DAYS AND HAVE NOT TAKEN A NEURONTIN SINCE WAKING. I WILL TAKE CELEBREX FOR 3 MO. FOR ANY SWELLING AND THATS ALL. WHAT SHE DID WAS BURR A HOLE BEHIND MY RIGHT EAR AND GO UP ALONG THE 3rd NERVE (i think) THERE SHE DISCOVERED NOT ONE BUT TWO LIL KINKS IN THE NERVE AND PLACED 2 LIL TEFLON PADS ON ONE SIDE THAT WAS STRIKING THE OTHER NERVE AND CAME OUT AND CLIPPED THE 3 FACIAL NERVE ON THE WAY OUT. WAS TOLD I MAY HAVE SOME FACIAL DROOP OR NUMBNESS. LUCKILY I HAVE NEITHER! I MISSED 3-4 WKS OF WORK. TO SEE HOW I DID WITHOUT MEDICATION AND HAVE DONE FINE. IT IS SO GOOD TO BE ABLE TO EAT AND DRINK WITH OUT THE PREVIOUS RIGHT TEMPLE PAIN. AND TO BE CLEAR HEADED BEING OFF ALL OF THE MEDICINE. IF YOU HAVE ANY QUESTIONS REGUARDING THIS SURGERY PLEASE CONTACT ME THRU THIS SIGHT. PAINFREE IN LAKEHEAD AT LAST Name: SHERRIE I WON'T GO INTO GREAT DETAIL HERE, BUT IT SOUNDS LIKE I COULD TAKE A FEW SENTENCES FROM EVERYONE'S EMAIL AND MAKE A STORY THAT YOU HAVE ALL HEARD! BASICALLY, I AM LIVING A NIGHTMARE. I AM NOW CONSIDERING SURGERY. EITHER MICROV DECOMPRESS. OR THE BURNING OF THE NERVE END. ANYONE HAD EXPERIENCE I COULD SHARE FROM? PLEASE WRITE! I WOULD ENJOY A PHONE CALL FROM ANYONE WHO WOULD CALL! IT IS SO VERY DIFFICULT TO TALK TO OTHERS WHO DO NOT UNDERSTAND. I FEEL LIKE A "WHINER" NOW, ALTHOUGH MY FRIENDS AND FAMILY TRY TO BE SYMPATHETIC! THANKS. THIS SITE IS GREAT!!! (502) 425-3008 Name: Laurie I have had constant pain on the left side of my face for about 1 1/2 years. I have had all the teeth root canalled on that side only to find the pain is still there. It all started last August 2001, I got super stressed out about some bad news in my personal life. Within 2-3 hours I had severe pain and blisters around teeth number 12,13,14 (upper left side, for those of you that have not put their dentist kids thru college with unnecessary dental procedures) I have had a history of fever blisters during illness or stress but never like this. Well the blisters healed and went away but the pain has never gone away. I had all that dental work done, sinus surgery and was on antibotics for 8 months. Upon completion of the last root canal the dentist said he thought I had Neuralgia. I have since had a cat scan by an ENT-normal. MRI my neurologist-normal. I have constant pain, electrical shocks along the left side of my nose and mouth.I NEVER PUT THE TWO TOGETHER UNTIL RECENLTY. The pain becomes very severe during a breakout of fever blisters. Although I now take Acyclovir to control the breakouts, I beleive there is some connection. Maybe PHN is not always related to Herpes Zoster/Shingles. Let's find out!!!I have posted on the G.u.e.s.t book doing an informal survey of anyone experincing similar symptoms. My question here: Does any one else feel a correlation between the 2? Is any one having anything related to my story? The neurontin is helping, but the pain at this time is extreme......... Please anyone feeling that they have fever blisters/herpes related TN, EMAIL ME!!!! Please read Kara's post on this forum of 7/3/02 regarding her husband. Pay special attention to her last few sentences. So far of the people who have answered the informal survey we have an 80% link to herpes. My neurologist has stated that the virus lives in the Trigeminal nerve. My belief is that for some of us, not all of us, because I do think TN is caused by many different sources, the virus is erupting along the nerve inside of the face, with no visible signs on the skin. This is only a theory but from visiting other TN sites it is becoming one of the many theories out there. If those of us that feel this is the cause can band together, we can make a difference. Thank you for everyone's time. Please email me at lkmmled@pacbbell.net KARA'S POST: Anyone had success with these or anything else? Is anyone else getting the facial swelling (white puffy areas and boil-like eruptions)? just the part pertaining to skin eruptions. I also would welcome any comments from anyone suspecting NICO!!! I had 4 root canals. I want to make sure this is not a by product of my search for pain relief with all the dental work. Thanx, good luck to all.......... Name: Margot Greetings Posters: My name is Margot. I am 52, living in Iowa. I have not been diagnosed as of yet, having "Facial Neuralgia" but, I am getting there. I've had migraine headaches for over 31 years. The migraines are less frequent, and the neuralgia is replacing the migraines. Like many of you, I have been through the mill, going from one doctor to another. The doctors are treating me as though I have deep depression; which they feel is causing my symptoms. I am thoroughly disgusted with the doctors, but I need to press on to get some help. My symptoms are: Electricity type pain attacking the inside my head, pretty much my whole face, teeth and neck. (But, it doesn't hurt to touch my face.) I am bedridden most days. I might have one good day per week. And doctors wonder why there could be depression? Most doctors lack so much compassion it isn't funny. I decided to have many of my old fillings replaced in my teeth 2 years ago and that's when all of the lightening and electricity started. Actually, my nose was the first symptom. The best way to describe it, is having a TIGHT FIST THROBBING inside my nose. It hurt so bad that I couldn't function. I went to a nose specialist and he said I needed "Nasal Reconstructive Surgery." I went for a 2nd. opinion and he said, "No surgery." I went with the first surgeon, because he gave me a 80% chance success rate and I knew his reputation was very good. He is a good surgeon, but it did not take care of the pain. He removed a bone spur and straightened out the cartilage in the nose. Pain Management at the University of Iowa did not help me. I tried DHE45 at the University Hospital and had a HORRIBLE reaction; chest pain, hyperventilating and a cold sweat. The nurse didn't show up and the resident doctor was condescending, so I left the hospital that night. I was supposed to stay 3 days. I've been on the majority of medications listed on this site. I've read all of the stories on this site, and feel excited about meeting many of you online. I've already written Dusty & Tia, because they were closest to my symptoms. They were very helpful. I've also had 2 teeth removed, and recently 2 root canals. At this point the dentists have been great. They do not feel that more dental work will help me. They are having me see an Oral Pathologist in the Oral Diagnosis dept. at the University. The dentists feel he can help me more than a Neurologist can. But, I have a strong feeling I will need one of the choices of surgery that I have researched eventually. Any feedback from you would be appreciated! Margot Name: Patty Hi! I've just been diagnosed with Trigeminal Neuralgia and have had my first MRI yesterday. My doctor has put me on Vioxx when the pain hits, has anyone else used this medicine for treatment of pain? Also, from what I've read, MS sometimes is related to TN and this scares me. Is this true? I also have Fibromyalgia, so this is just an added pain to have to worry about. Thanks for your input! Name: Brian I have had AD since 1988. The right side of my face has been totally numb with crawling sensations ever since. I am always looking for better treatments. Please e-mail me if you have found something that has helped you. Name: Sue Hello, I am a 38 year old female and I have just been diagnosed with TN and received a prescription for Neurontin. I am still in denial, having only had an occasional episode of brief flashes of excruciating pain in my lips, cheek, chin and around my left ear. I had my first episode approx. 2 years ago with a flare up every 3-6 months. The electric shock sensation lasts for approx 3-5 seconds and happens every 7-10 minutes for a day or two. I am wondering if I should take the medication now to avoid future episodes or wait and see if it happens again. Can someone let me know if they had an occasional episode at first that progressed into more frequent occurrences? I am confused about this disease. I must be in the early stages?!?!?! Name: stella I HAD REAL BAD SIDE EFFECTS WITH TEGRETOL...IM TAKING NEURONTIN 300 MG 3 TIMES A DAY .....SO FAR NEURONTIN HAS HELP THE ATTACKS....BUT I STILL GET THE TICKS WITH A LIGHT BREEZE OR WHEN I TRY TO EAT.....IM CONSIDERING GAMMA KNIFE....IF ANY ONE HAS HAD THIS PROCDURE DONE PLS ADVISE ...THANKS Name: connie I just found out what I have is neuralgia. Does it get better so you can lead a normal life again? Name: kara Hi, I am writing about my husband because he is not in a place, yet, to sit down and write himself. His pain started out of the blue soon after a wisdom tooth began hurting him. He was on antibiotics for a month until all four teeth were able to be extracted. I would say about a week after the first toothache he started getting upset about facial swelling/bumps and burning sensations. Well the pain rapidly snowballed into a constant burning/swelling which he described as a blowtorch on his skin 24/7. We didn't know what it was and he tried everything. Doctors said acne (hah, out of the blue in a 37 year old man?), allergies (but severely restrictive diets and allergies meds did nothing), they even accused him of being a drug addict coming down from something (he is a wonderful father of three beautiful girls, never had a recreational drug in his life!). So, needless to say, it's been depressing dealing with doctors. I finally researched through the internet and became convinced he needed a neurologist. A year later, now, and he's seen one that put him on Tegretol which actually made him feel worse. He went back and the doctor said to increase it. My husband's instincts say no and the doctor cannot do anything else for him (wouldn't even test him or anything). We feel like we are at square one and he is so depressed with the pain that he barely talks to anyone and I am scared because I feel like our daughters don't have a dad anymore and if he can't enjoy them what's the point in life? It frightens me. My questions to anyone out there who may be able to help are: Is Acupuncture worth a serious try? or Chinese medicine? Anyone had success with these or anything else? Is anyone else getting the facial swelling (white puffy areas and boil-like eruptions)? And also, what is the best way for the family to support a person going through this--I feel like since I can't make it better that I am helpless and always doing/saying the wrong things. Any help would be appreciated, we'll try anything at least once! |
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