|
|
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: Lynda Name: connie StoryI have suffered with this for over two months. do you believe eating a diet with vegetables and fruits is the best thing to help not medicine. Name: Colen
I came up on this web site while searching for anything I could find on trigeminal neuralgia. I will try to tell you to the best of my memory about my experience with trigeminal neuralgia. The dates I will tell about are only approximate. It started with a slight twitch on the right side of my face , then I had what I thought was a toothache. I ended up having 4 teeth pulled, two teeth by one dentist the other two by another dentist, before the last tooth was pulled the dentist told me he thought my problem was trigeminal neuralgia. I will not give all the details. I was given tegretol , but the side effects from it was more than I wanted to deal with. I had the radio surgery deal, but the pain came back later when I had a vehicle accident. I had the decompression deal, and I was pain free on the right side & I am pain free still on my right side . The year was somewhere around 1979. Approximately eight years later the pain started in my left side. I have had pain that comes and goes ever since then. It feels like electricity shocking you in the face. Talk about trigger spots as of right now being the 19th day of June 2002 there's one on my eye , my nose, inside my nostril on my upper lip & under my upper lip,all this is on my left side. The things I want to say now probably very few people will agree with. I thank God for what this pain has done for me it has definitely made a better person out of me. I am not saying that I would not love to get rid of this pain. Only God and people who have had this pain can know how bad it is. Thank God for helping me keep my sanity thru this. <colenmann@yahoo.com>
Name: Denise I am a 28 year old female who has always been relatively healthy except for having migraines since age twelve. I had about 1-2 migraines a year and they have always been controlled with Fioricet being taken as needed. Anyway, I was on hormone pills (Lupron, Progesterone, Estrace) to undergo IVF procedures in 1999 and 2000. Recently after I began having daily "headaches" that I describe as facial pain--like sinus pressure. My doc said they were tension, the ER doc called them migraines and I was convinced they were sinus infections. I had MRI's, CT scan's and any other test you can imagine, only to find that I have a cyst in my sinuses but they are completely fine and unblocked and the cyst doesn't affect anything. So I went to a neurologist who heard my story. I was so frustrated because although the test came out fine I have been having the most horrendous facial pain that feels like a sinus infection. It is in my sinus area, either one side or both and sometimes extends to my nose and feels like so much pressure and intermittent throbbing that actually feels like my head will explode. The throbbing itself comes and goes and if I stay perfectly still it will subside within 30 seconds or so but leaves the "face aches." My neurologist thought maybe it was from the IVF hormones and that was that. The pains came worse and worse and since 11.01 I have been to the Emergency room 6 times for Demerol, Morphine, Toradol etc. to help with the pain. This is discouraging since, after having migraines for 16 years I have never ever needed to go to the ER until now. My neuro diagnosed me with trigeminal neuralgia in January and started me on Carbamazpine (tegretol) 200mg twice a day and Nortryptline 50 mg once a day. That seemed to help but since then I have had 4 attacks to where I needed the ER and have had to increase the meds to Tegretol 200mg 3 times a day and add Baclofen twice a day. Everything I read on TN says it feels like shocks and mine feels like pressure---so much pressure that I get so overwhelmed. I have a husband and children and work and can't keep having this pain. But do any of you have the facial pain (pressure) like me, and if so has anything helped? I feel so bad because I try to convince my neuro that it is like sinus pain and it is so intense but I feel like he will think I'm crazy. So far on the meds I thankfully have gotten only 4 or so attacks that needed the ER visits but I am so scared to keep getting them and going to the ER. Does anyone have any suggestions? Does anyone else have this same type of pain? I would love to hear from anyone. Thank you all and I wish you tons of luck on finding help for your pain. Name: kathy I recently had a MRI with contrast and a focus on the glosso nerve. The MRI did not reflect any growths. However, does the MRI rule out ALL possibilities of the nerve being compressed or looped or dysfunctional? Or does a surgeon need to look directly at the nerve to prove glosso neuralgia?? If so, can you recommend a University who has a neurosurgeon that can help? My other question is regarding my immunology. I have had low IgG and IgA lab reports along with swollen lingual tonsils and outwardly lymph nodes and inner ear pain w/o infection during this period of intense intraoral pain. Could this be a possibility of the pain? Any help would be greatly appreciated. Name: "Susan" after the birth of my son two years ago i started to get a shooting pain in the right hand side of my jaw which at the time i thought was a tooth ache needing a filling so off i went to the dentist like so many of you i have read about basically the story is the same after several dental proceedures and loosing a tooth i was finally referred to a neurologist who knew exactly what i was going through.It was then I started experimenting with different drugs to stop the pain the only drug that was a bit successful was tegretol but it made me extremely docile,which i could not be as i am only 31 years old with three beautiful children aged 6 4 and 2 i found it very difficult to eat and brush my teeth sometimes putting lipstick on was almost impossible. probably three months ago i decided i needed to try something else to get rid of this pain as i had not eaten properly in over 2 years i had lost about 14kgs and was actually getting use to not eating because i associated eating with pain.i feel like i have lost the past two years of my life which is not something you want to do when you have 3 special children doing things for the first time that you dont want to miss.anyway on the 28th May 2002 i had decompression surgery not even knowing from any scan whether there was a blood vessel compressing on the nerve or not. My surgeon seemed pretty sure that that was what it was and he was absolutely right i actually have photo to prove it and of course NO PAIN. Yes can you believe it NO PAIN .I feel like I have been given my life back. In closing I just want to say that surgery for me was worth having a go and i am so happy it has worked especially for my family's sake. I want to thank you all for your stories they have kept me from going insane knowing that i was not alone. i wish you all goodluck in becoming pain free godbless you all i know what you are going through please persevere the end may be in sight for you. Name: sue had probs since I was 13 now 50. Hope to have op, had 3 MRI scans, been injected the magnet ions, hope they find something. Been with this spasm now for months, getting fed up with it. tablets some times quiet it down. have difficulty in eating and cleaning teeth. Have had the pain much much worse. At least there is a light at the end of the tunnel. Hope to have the op in London soon Name: Lisa My first attack came on Valentines day, I woke up with what I thought was a toothache in the middle of the night. I went to the store at 3:00 am and bought "oragel" in the morning, I called my dentist. Even though I had a complete diagnostic set of x-rays on Jan 25th, he said I needed a root canal in the tooth that was bothering me, he began the procedure, gave me pain meds and an antibiotic, later that day I called him back crying over the pain, he told me to take more pain meds and come back to finish the root canal in 1 week. The next day at work I was crying, it hurt so bad, I went back to the dentist and asked to see another dentist, something was not right. She gave me 4 shots to numb the tooth and finished the root canal. The entire time I was numb from novocain I was in excruciating pain. She told me I needed to see a medical doctor. That night I went to urgent care, the PA knew what was wrong with me right away, she copied the page from her Physisians Desk Reference and told me they would refer me to a Neurologist. They did. I began with Tegretol, after getting up to the maximum dosage with no relief, the gave me Neurontin also, so now I take both. Plus, they gave me Pamelor (nortriptalyn) an anti-depressant. It has really helped with the headaches, but my nausea is severe. Finally, I was referred to a Neuro sergeon, and am awaiting a surgery to "shock" the nerve, a procedure done with a long needle, I meet the doctor again on June 5th. We will see. I can not take the pain anymore and will do whatever it takes to relieve it. I have given up selling AVON, I am on Disability, no more soccer mom, girl scout co-leader, my entire life has changed, I dont even enjoy shopping anymore. My children are with my mother most of the time, I have three girls and do not have the strength to care for them. I am a mess. I pray every day that this will be over soon. I WANT MY LIFE BACK! If anyone needs to talk, I am awake most nights, sitting in pain, wishing for someone to understand, if you are in the same position, drop me an email. Name: ginger Name: jack I'm putting this in for my daughter but also for all of you that are in pain heart goes out to you all my daughter had the "decompression" with the Teflon sponge operation about 8 yrs ago and she had them go in twice to no avail she is currently taking 16 pills a day and some times the only relief is a "metro-dose pack" which is not for you at all and she is considering surgery again I would like for the people at this web site to put...www.tnasupport.org/tnalert/returns.html for general information from what I've been able to find out the decompression surgery is the least successful of all the treatments. the radiofrequency rhizotomy has the best track record so far, and I haven't been able to find out about the glycerol injection treatment yet, I believe its a lot less invasive than the decompression is Name: Dave About 2 years ago a sudden pain shot down one side of my face. In my head I could hear the tick tick tick of the nerves touching together. The pain was as far as you could go without blacking out. (You know all this.) I though it was tooth-ache. I lived on pain killers for weeks before I got to the Pain clinic at the hospital. I still though I had pain caused by my teeth. Thats my history. The doctor put me Carbamazepine. Over the past many months I have had to take 4 and recently going up to 6-100mg tablets a day. Before this had started I had seen my own doctor about another matter concerning spots on my face and she prescribed a cream to rub on them. I did use it for 1 or 2 days but when the Facial Neuralgia started nothing else seemed to matter Recently I started to use the cream again for my spots and found that it helped to reduce my need for tablets. Slowly but slowly I have come off of all the tablets and now rely on the cream along. The cream I used was Fucidin H. The one I use now is plain Fucidin. I use it morning and night and it works for me. Do give it a try and see if it works for you. I'm hoping that some one will look into this and make a cream for us so people do not have to take so many tablets. Be Lucky. Dave Reed. (PS. I have no connection with the makers of this cream.)
Name: Damian Hi everyone, I suffer in different ways. First there's the pain of the disease/condition. Second there's the pain I face when I try to convince others of just how bad this really is. Ill start with the physical pain. My trigger is taste. Whenever I taste solid food (weird that drinks don't have the same effect) my skull is attacked with the most tremendous blinding pain. I literally hold my head moaning waiting for the pain to subside, which it does after 30 seconds, and i can continue eating. Usually theres a baseline pain, which is continous throughout the day, but Neurontin has all but neutralized this pain, and left me only with the pain of eating. Socially this pain is ruining my life. Im a truck driver by trade, and have basically had to call it quits, as the neurontin has made me kinda zombified, like fuzzy in the brain and bad with motor skills. I sleep way too much now, and sure cant imagine not taking my neurontin, as it has brought some peace to my life. Im 29 years old, and have never experienced the pain that TN brings. It is horrible, and very consuming. You cant concentrate, you get edgy and quick to fight with other people. It's like hearing a high pitched, annoying noise that just doesnt stop. My own pain is centered in front of, and behind my ear, right side. When i get an attack, it's like someone shoving a red-hot poker into my ear drum over and over. My scalp from my temple to the back of my head itches and twinges with pain. If it's windy outside, I wont even bother stepping out the door, since even a mild breeze entering my ear is enough to trigger the pain. As I said, my main trigger is my taste buds. When i sit down to a meal, i know im in trouble. The food comes to the table, I look at it, start to salivate and POW, recieve the most intense pain to the right side of my head i could imagine. From what Ive read, all of us suffer differently. We have different triggers and different effects, but we all seem to agree its the worst pain in the world. I hope someone who reads this finds comfort if they too are suffering and not sure what's happening. Tomorrow I go in for an MRI. I wonder what good it will do, but I have to believe there's relief somewhere to be found. Name: Linda In 1993 I started having a slight burning in the gums over my two front teeth. The burning continued to get worse and then stayed at a continuous level that it is now. The burning has stayed localized over the two front teeth. The first treatment was to have both of my root canals on my two front teeth. Since the burning did not go away, I then went on my journey of years of surgeries on the gums over my teeth, dental splints, and all of the medications that have been recommended for trigeminal pain (even though the consensus is that I do not have trigeminal neuralgia), etc. The surgeries took the pain away but the nerves regenerated and the burning pain returned just as it was before. I am now on Neurontin, Lamictal, Ultram,and Wellbutrin four times a day. The burning sometimes goes away with these medications and sometimes it doesn't. I will have good days and bad days. I have seen over 30 doctors since 1993 including oral surgeons, neurologists, pain management, neurosurgeons, ENT, etc. No doctor has ever seen the burning in the front gums. I ask for any suggestions for help including treatments, doctors, etc. Linda Name: Siobhan Hi, This is my first time here. I am hoping someone may have a little insight. I am 30 yrs old and have had 10 sinus surgeries in the last 3 yrs. My most recent surgery was in January (a valve reconstruction which involved drilling just underneath my eye). Since the surgery I have lost sensation in the left side of my nose, part of my left cheek, my left eye and part of the left side of my lip. I also developed constant flickering in my left eye. The ENT said the was "superficial" nerve trauma and would heal over the course of a year. However, the pain that went along with this (stabbing, burning like a hot iron on my face, pain with any movement in my face, constant throbbing) was so intense that I went to a neurologist who said this was damage to a branch of the trigeminal nerve (specifically optical). The neurologist put me on topomax which helped to a point but I have not been able to take enough of it to control the pain because it has caused a side effect of loss of circulation in hands and feet. I have told the ENT about the neurologist's findings but he insists that this nerve damage will heal in a within a year of the surgery. It has been 5 months now and the pain is actually more intense now that it was a couple of months ago and yet the ENT STILL refuses to admit this is as painful as I say it is or that it is permanent! Last night I had to go to the ER and get three morphine injections to control the pain (injections 1 and 2 were not enough). My boss has said I have to find a doctor to put me on disability or I will lose my job because I miss so much work (I get very little sleep because of the pain and I have lost about fifteen pounds because of my reluctance to eat). The ENT claims I am simply depressed! Well of course I am! Who wouldn't be with this kind of pain??? I am so depressed in fact that I am in tears every day just from the sheer pain! The situation feels completely hopeless. Has anyone ever heard of a situation like this where there was any improvement over time? I feel like the ENT is either a terrible doctor or afraid of being sued. My neurologist wants to put me on Lamictal but I don't want to take this drug because of the "fatal rash" possibility and the weight gain side effect. I am seeing a psychiatrist just to try and cope and even my psychiatrist thinks my ENT is the nut/sadist not me! I am so terrified of ending up like this for the rest of my life I just can't face it. Thanks for listening Siobhan Name: "Liz" My pain began about 8 yrs. ago. As I have allergies & sinus trouble, I spent much of the first 4 years having throat pain on the right side, thinking it was a throat infection, ear infection or whatever. The pain came and went a lot initially. I eventually went to an ENT who didn't recognize the disease as it was in the early stages. This went on for about 2 years. After much the same symptoms, but increasing pain (both in severity and intensity) I returned to the same ENT, went through much the same exam and he still had no idea. As the pain was much more severe, I was so frustrated started raising my voice, yelling at the man, which triggered some severe pain on the right side of my neck, throat and ear. At that point I was doubled over, crying and holding my neck, while yelling. He then said, "Oh my God.. I think I know, keep talking..." He did a further physical exam, on my throat and nose, then immediately sent me to a neurologist who also is a chronic pain specialist. That Dr. diagnosed GN after about a 15 minute history and a 3 minute exam. After some quick MRI's, I was immediately started on Neurontin. At that point my pain was very severe. when the pain was the worst, I sipping/drinking water round the clock, probably 15-20 quarts a day. I couldn't swallow much, lived on things like lukewarm soup or not very cold milkshakes. I couldn't stand the cold or heat on my throat. I couldn't laugh or raise my voice. I avoided talking. The pain was so bad I would cry anywhere--at work, in meetings, in front of my children. It scared them so. I was spending my life in the bathroom or in bed, usually crying..The pain was triggered by most anything, swallowing, eating, talking...It was around the clock and I woke up in pain, a lot. At that point, there seemed to be no periods of remission. I was thinking about death a lot. The Dr. started me on my meds as soon as we knew the MRI's showed nothing. I think I started on 100mg. 3 Xper day. I know that was late Aug. I started feeling some relief after a couple weeks, but not feeling much better until I was at about 600 mg. a day. I remember in early November, being at work, and suddenly thinking. Oh my God, I forgot about my throat. I had bought a soft drink and taken a gulp without thinking...I couldn't drink anything with carbonation for a long time..The bubbles triggered pain...That was when I finally felt "normal" again--and hopeful. Now with medication, I stay on any given dosage until I start having pain associated with swallowing again. The pain always does return, but sometimes I'll go 3 mos. before the pain is back, usually it's longer than that. This time it's almost a year, but I'm at 2400mg a day now. I started having real medication side effects at about 1800 mg. a day. These side effects are more frustrating than anything, memory loss, poor concentration, spaciness, daydreaming, etc. But I still live a normal life, rarely use a sick day, and am just grateful that I'm still here and not in pain. I very much remember, crying in pain, screaming all the time, and thinking about suicide. At this point, it's the medication that allows me to live a normal life. 3 years ago I didn't think I would live to see my children grow up.. Now, even though the pain is still increasing and the future still scares me, I am much more informed about my disease, the medication options, and that there may have to be some possible surgery options down the road. At least I know what the problem is, and I have a doctor who is very knowledgeable. He is pretty conservative, with regard to surgery, but is quick to lay out my medication options. He seems to understand the severity of my pain, I'm not sure anyone can understand how that amount of medicine changes your other life. But, at least the pain is gone, for now.... Name: STELLA IM A PHONE AGENT....WHILE AT WORK ON APRIL 9,2002...I WAS SPEAKING WITH A CUSTOMER ALL OF THE SUDDEN I GET THIS TERRIBLE PAIN ON MY RIGHT SIDE ...FELT LIKE HUNDRED OF HOT NEEDLES ON MY FACE..I COULD NOT EVEN TOUCH MY FACE...WENT TO DENTIST TOOK X-RAY SD NO PROBLEM WITH TEETH ...WENT TO MY DOCTOR SD HAD TRIGEMINAL NEURALGIA ..PRESCRIBE TEGRETOL ...HAD TERRIBLE SIDE AFFECTS ....SEND ME TO A NEUROLOGIST ...PRESCRIBE NEURONTIN...SEEMS TO CONTROL ATTACKS ....BUT TRIGGER POINTS CAN BE ANYWHERE ON MY FACE OR HEAD....SOMETIMES I CANT TALK OR BRUSH MY TEETH... I HAVE NOT EATEN SOLID FOOD SINCE APRIL 9TH ....WHEN I GO OUTSIDE I USE A SURGICAL MASK BECAUSE EVEN LIGHT WIND WILL TRIGGER PAIN....SOMETIMES I JUST WANT TO GIVE UP...BUT FAITH AND PRAYERS KEEP ME GOING ... Name: Grace I just want to say, My heart is out to all of you fellow sufferers. I am 47 yrs old, and have had this since I was 31. I have had over 45 procedures or hospitalizations, and nothing, nothing has been as horrible as these conditions. This week I finally got diagnosed with the Glossopharyngeal Neuralgia in addition to the ATN and the rest of it all. You already know the suffering. I do want to tell you we must have hope and ask for Prayer. At one point I took about 20 drugs a day because of other illnesses due to drug reactions from the medicine for this major problem.The drs who tried their best to help me, almost put me in the grave, because of not really caring about side effects.I also encountered living with Primary and secondary Lymphedema of the legs, from the medications. My legs swelled to 3 times their size. Being off the majority of antiseizure drugs helped this greatly, now my legs are normal, but I must elevate them hours a day to keep swelling down. I no longer must bandage them with foam and wrappings, thank the Lord. I finally found something that helps and I have tried everything but brain surgery,and I had my first remission since 1986!It lasted 6 months! In Dec 2001 I had a divine encounter and learned about ALPHA-STIM technology ( www.alpha-stim.com) You do need a Physician prescription. Don't confuse this device with a TENS unit. This device closes the pain gates, and is the body's own elctricity, 1000 times weaker than a Tens.Alpha-stim is used in Europe post Surgically, and is FDA approved. Tens was so awful for me, very painful, though i suffered thru it for 2 yrs, wearing patches 20 hours a day on my face. With the Alpha Stim, I finally slept more than 2 hours in 48! On my first night of only 20 min of treatment, I got 5 hours of sleep. My whole ordeal started on July 4, 1986, with an abcessed lower right 6 yr molar. I have a degree in dental assisting. We were never taught about TN, let alone ATN and the rest these neurological disorders. I had a reamer break past the apex of the root, into the jaw, and that piece of metal could not be removed. I have a serious deformed bite and could not have correction. For 8 yrs I was in agony. I was suicidal. They tried everything, and many oral surgeries, injections, you name it. I finally had to have an apicoectomy and then the tooth removed. But the TN became ATN, and spread to all 3 branches, behind my ear, in my eye, I went on to other neuro and other health problems. I went Undiagnosed of the full scope for years. Here in Vt I am sad to say this condition was not understood at all and still, I am the only patient a few drs have. But I feel there are many undiagnosed patients like us. I remember the day I finally got diagnosed, I wept in the chair, because the 10 page form described some of my pain. The first time I saw my life in print, I could barely talk for weeping. That was by an orofacial pain specialist, his primary treatment was TMj. In the early 1990's I had one neurosurgeon tell me I was a hysterical female, he did not believe in TN! Yes, dear ones, I have suffered shame with this too. However, I am blessed to have a great dentist, and primary dr.and a Wonderful Husband by my side. I learned to have a caring doctor is a gift from heaven and if I did not have one, keep on searching. I have since progressed to all the above listed illnesses and other non neuro ones. I know some drs treat us terribly because they just can't help and are too cowardly to say so, But I also know the brave drs who really try and feel badly when they fail, and with their hearts they want to help us. I know when your child grows up and all she has seen is an incapacitated mom and when your husband has to remember what side to kiss you on. When you are not expected to attend any social event, even in the family, When Your friends give you all sorts of scarves, hats to help and then tire of you, and the friendship ceases. Many stop asking how you are. I know it all.I also know all the years your loving church family never stops praying for a miracle for you, visits you in the hospital and makes meals for your family, and prays for all your needs, then celebrates when you go into your 1st remission. I never knew remission existed! I think remission is a misnomer because the pain I suffer never stopped,it just diminished a lot.And I know how hard it is to " go backwards, back on Morphine" and lose your independence, for years. I have to say, prayer and learning to try to see a blessing in a day have helped a lot, especially trying to help someone else in the midst of my pain, even to send an email or card. I admit can I got pretty ugly to live with. I never thought I was mean, until I went thru cold turkey ( hell) and everyone said how much better I am to be with! Now I have had a setback,I am back seeing hospitals and drs. I have learned no one has an answer but God. I died and I came back here, to live out this pain, but I know 1. God is real. 2. He loves us all, 3. Hope never ends, and if you lose yours like I lost mine, To find someone to give you some of their hope. Here is some hope from me! Gentle hugs and blessings, Grace in Vt Name: Ronda I have had neck pain for several years that precedes head aches and triggers spasms in the left side of my face and left arm. I was misdiagnosed with migraines for the past two years. None of the migraine medicine really worked. I supposedly had epilepsy for the past several years which originated with numbness and tingling in my left arm and face. After a year of intermittent numbness episodes I experienced my first tremor and lost consciousness (I believe due to hyperventilation). These unexplained tremors and pain were scary and putting me into a panic state. I suspect I am misdiagnosed with epilepsy although I can't be sure just yet. About 6 months ago the neck pain got so severe it led to vomiting and hospitalization. Treatment was phenergan for vomiting and Demerol for pain. This works well but is incapacitating! Still no one knew what was wrong with me and all of my doctors were ignoring my initial complaint of NECK PAIN!!!! Ughhhh! Neck pain!! Why don't they listen? I know my own body! Well finally, I think they have it right. Occipital Neuralgia. I see the x-rays and MRI results in a few days. The so called seizures? I am curious because Treatment for O.N. is anti-convulsants too. Could it be why they helped all these years? They certainly did not cure anything, only help dull it (tremors and neck pain I mean). I am looking forward to the new treatments. If anyone has both a Neuralgia and Seizures please contact me. Name: Margaret My husband has had TN for 7 years since having the shingles. Recently he has traveled by air , two short journeys of 1 hour's duration each, both on the same day, & as soon as the plane became airborne he had extremely severe TN, in the teeth & upper lip. The upper lip became numb, & he was clammy,& had nausea from the severe pain. On both flights, as soon as the plane was almost at ground level, the pain was almost gone, just residual pain. The ten days prior to this he had had 3 flights of up to 2 1/2 hours duration each. Has anyone else had this experience? Is it the pressure in the cabin? Why didn't it happen on all the flights? Name: "Katie" I have suffered for about 10 years plus with TN and went to a well known Clinic in Seattle to every kind of doctor even phsyc. and no one could tell me what I had...I was raising 2 children and never could plan anything do to I didn't know when the pain would be to severe....so life was so painful every day I didn't think I could go on, let alone the family and friends thinking what was wrong with me I was always sick...then I met a lady doctor and told her I wanted to just get run over by a truck I couldn't go on...she diagnosed me right away <heaven sent> for I also had severe headaches and my pain was on going most of the time...didn't let up much...besides loosing self esteem from doctors not figuring out what I had and missing out on so much of my families activities and the pain soooooo very severe...I was ready to write a book on it so others didn't have to live this way....well my doctor gave me tegretol and right away I started feeling little tingling over my face...after that it started to get better. I get it occasionally very mildly if I don't take the correct amount which my doctor allows me to regulate pretty much...from 200mg to 600mg a day....but most of the time just one pill...also every year a blood test for the liver. PLEASE anyone with this problem there is help!!! We can make it!!!!!! Don't give up.!!!
Name: Sally HI, I sent in my story two weeks ago and have had two responses...thankyou! I need some advice from anyone out there who knows anything about NICO...my naturopath is sending me to see a specialist at the Cranio-Facial Pain Centre in VAncouver this week and I want to ask all the right questions..what tests need to be done ? Has anyone had success with the bones being scraped and infection removed? I am very scared of surgery...will it make this constant pain worse? I welcome all responses on NICO! Thankyou...Sally Name: "Singer" My ophthalmologist is very puzzled by the pain on the L side of my face, from the hair going into my head down to my temple, cheek and chin. It is very painfull but I don't seem to have the tic or spasm that many describe. I have had 3 eye surgeries in 2 months on my L eye for squamous cell carcinoma and this pain came only came after the third surgery. My eye is supersensitive to light and burns all of the time. Could this be trigeminal neuralgia even tho I don't have the spasms? Name: "Dusty" About three-four years ago I began to feel pain in upper left side. I thought it was a toothache, I couldn't sleep on that side. I went through multiple dental treatments and finally had 3 teeth extracted, pain persisted and was constant. It took many dentists and doctors but I was finally diagnosed with TN. I am 62, female and also have arthritis and lifelong migraine headaches on same left side as the TN. My family Dr. prescribed tegretol, I vomited on this. A neurologist prescribed other anti-consultants, all had bad side effects and I couldn't take. Fioricet and ultram helped somewhat. But finally by some miracle my headache doctor prescribed Amerge for headaches, however I found it was working for TN. Now I am taking Amerge regularly for TN. It is not known for this but it works. It takes the pain away without any side effects. 1 pill every other day. For me it is a gift. I also take other pain med. with this Amerge, but together I am almost normal. I just started taking this in March. I hope it continues to work. I told the drug manufacturer about this and my Doctors. Has anyone else tried this medicine. I hope I can help others with this advice. I know the pain is debilitating and worse than others I have experienced. Thanks to God and my doctor I found this treatment. Sincerely, Dusty. Name: Connie I had nerve damage to my face from car wreak in 70's now I am in a lot of pain from my gum pn right side also. I had all my teeth knocked loose from wreck. Help what can I take before I can get medical treatment. I have no insurance at this time. Connie Name: Frankie Went to neurologist today for first time. He did not exactly say I have TN but gave me Trileptal. He thinks it was caused by a flu virus I had in Feb 2002. That is when this started. I don't have the excruciating pain I have been reading in all the other stories. I am thankful. I do have twinges, tingling, burning sensations on the right side of my face, just above and to the front of my ear. It happens every day, off and on, all day long. Does anyone else have this or similar symptoms? All of the stories I've read indicate pain, and I have had a few stings that were painful, but none like you all have described. I went to eye doctor, dentist (who actually led me to tn), pcp, and finally to the neurologist today. Other strange things have been dizziness with feelings of not seeing straight and hearing grinding noises in my head. Also, popping in my jaw in the same area of the twinges. I've been too embarrassed to mention this to very many people. When I do, they just look at me and think I'm imagining things. I would like to hear from anyone else with a similar situation as I have never heard of this condition until my dentist mentioned it to me. Thanks.
Name: Tina I first wrote back in 99.I broke my lower jaw when i was rear ended by a 18 wheel semi. I was stopped behind 3 other cars in a school zone. i broke my lower jaw on both sides. I now have 2 plates and screws on both sides keeping my jaw togethter. i ended up with permanent nerve damage on my right lower side of my face. inside my mouth: teeth &gum and my inner cheek outside :my lip, chin, cheek, and my jaw line on the right side only had just been on zanaflex as my last option before a tens unit is tried. i hope the tens unit will mix up the signal that tells my brain i am feeling pain all the time. the zanaflex did not help me at all with the painfull feeling and burning electrical shock fits. I need a face cover to go outside cus the slightest breeze triggers the shock fits. brushing my teeth is impossible on my right side. i need plastic spoons forks a straw. I can only chew on my left side. AND I MISS KISSING MY LITTLE GIRLS AND HUBBY LIKE I COULD BEFORE . I was hoping somebody will have some info on tens units if they helped or not and any side effects???? PLEASE WRITE if you do or if you have questions i might help with. this web board is god sent happy there is a place like this . Tina Name: Sally Hi, A year and a half ago I had a tooth extracted...complications followed with the fitting of a bridge and the teeth beside the "hole" were exposed for too long and died. root canals in the area now number three...still the constant aching burning and at times almost itchy pain...the enodontist froze the area and one tooth froze and didn't hurt anymore but the ache described above did not go away...the tooth with dental pain should be extracted but I am so afraid of making the nerve pain worse...the neurologist put me on 3000 mg of Neurontin a day...WAY TOO MUCH and no change in the pain...I weaned off it and the neurologist told me I will have this pain for the rest of my life...I refuse to believe it...I then went to a Naturopath and spent about 700$ on treatments - homeopathic meds, diets and treatment with a SENSAR ?? machine...no help at all...now I am considering acupuncture and tonight I bought a tube of Zostrix (capsaicin) I am really scared to try this cream. I read other peoples stories and would like to try it but need a little more direction before I put it in my mouth...Is there someone reading this that can help me...All the specialists have said that my pain is not trigeminal neuralgia but atypical TN...HELP!!! I do believe that there is power in support...reading the stories has let me know that I am not going crazy and imagining this pain-It is very real...Sally Name: Carey I have had headaches for about seven years now. They have gotten worse in the last 2 years. In that time I also got married and had a baby. The pain has gotten so bad I often miss work and have to cancel plans with the family. I don't even bother to make any with friends anymore. For the past few years they've been treating me as if I had migraines and that the pain was also coming from my TMJ.In the past year I found out I had occ.neur..They have tried shots in the neck and head, all kinds of pills, physical therapy and I've gone to the chiopractor. NOTHING has worked!!! I feel one day my family will hate me for this and leave. I wouldn't blame them, because I can't stand me. I'm so irritable and can't do the 'fun' things with my family. It isn't fair and when the pain gets real bad I've thought how I wish I would just die. Right now as I type the pain is at about 7 on a scale of 10. Yesterday I was so bad I had to get a shot of Demerol again (The people at the ER are starting to know me by name). I can't live this way anymore and don't know how long I can take it for. My husband tries to understand but doesn't even know really what a headache feels like,(He's the type to never get sick) let alone the pain I feel. I need to talk to someone who understands! Name: Jo Anne T. I have lived w/TN for 6 years. My medications have been Tegretol, and when that wasn't enough I had Neurontin too. When they both quit working last year I had the Vascular Decompression surgery done at the Cleveland Clinic in Cleveland OH. Dr. Gene Barnett gave me a 70% chance of a complete recovery. However, I had 2 arteries and a vein all pressing on the nerve in question. The arteries were no problem, but the vein was too close to the brainstem to get the pad under it. He feared giving me a stroke. Consequently, I am Still living with TN. He said it should never be AS bad as it was before the surgery, but it will probably never go away. One reason for me telling this story is to encourage anyone who is considering the surgery to give it a try. It was well worth doing for the chance of being pain-free. Dr. Barnett said my situation was rare. I HAVE found a very encouraging treatment, however. I have gone to a Massage Therapist for several treatments, and she has given me instant relief when I was very miserable, and long lasting results. The last treatment took 2 days to show improvement, but I am going into some level of REMISSION. I have been at 800mg of Tegretol for months with some bleeding thru of pain, and at this moment, I am at 700mg with no pain! When I told my Neurosurgeon what I was doing he said keep it up. He had recently tried Massage Therapy and saw first hand what a difference it can make it how you feel. If this info helps only 1 person get some relief, I will feel wonderful! Don't give up, sometimes help comes from unexpected places.
Name: "GenDen" I have constant pain in the left nasal cavity. My ENT thinks it is Sluder's neuralgia, but offers no treatment. On his referral I have spent a year as an outpatient of the pain management clinic, but the pain still persists. I would appreciate hearing from anyone who has successfully been treated for this condition. I don't know who to go to now for diagnosis and/or treatment. Name: Lori H. Just an update......The gamma knife surgery was successful for 8 months and then it was back......with a slight numbness, then I tried the chiropractic thing and that was a waste of 3 months and a lot of hard earned money.......now I am on Topamax and no side affects and this seems to have it under control..........I am just keeping my fingers crossed at this time, but the numbness is gone from the gamma knife, so I may consider having that done again.........If anyone has had any luck with any thing else, please let me know. thanks......... Name: barbara I have gone to University Hospital to Medicine Clinic for 8 years for TN, but with out relief or certain diagnosis. I finally saw a Neurologist and he didn't think I had TN. because I didn't have Spasms. This year I had an assemetrical tonsil and had it removed for a biopsy for lymph node or tonsil cancer. That was 2 days ago, the tonsil appeared normal and behind it was Calcified Stylohyoid Ligament. My mother asked the surgeon if that could be causing my face, neck, jaw and temple and teeth pain. He said no, that it would cause jaw or throat pain if you touched it. I came home and looked this up and it fell under Eagles Syndrome. In the immediate definition of it was neck, face, pain. So does my doctor not know what CSL is and Eagles Sy. ? Maybe now after 8 years I have an answer. I had found a list of face pain causes and I can't seem to find it now, which I thought included Eagles Sy. I Name: TIA LOOKING BACK SYMPTOMS STARTED 3-4 YRS BEFORE THEY BECAME INTOLERABLE...AFTER BEING REFERRED TO A NEUROLOGIST WHO DIAGNOSED ME WITH BELLS PALSY, EPISODES BECAME EXTREMELY INTENSE AND FREQUENT WITH MULTIPLE VISITS TO ER. AN ER DOC FOR WHATEVER FAMILIARITY, SUGGESTED TN; MY NEUROLOGIST BLEW IT OFF INSISTING AT THIS POINT THAT I WAS A "DRUG SEEKER" AND SENT MY HUSBAND AND I AWAY TO A PAIN CLINIC AND FOR DRUG COUNSELING! I HAVE NEVER DONE WELL TAKING MEDS AND NOT ONE TO "LIKE" THE FEELING BUT I SPENT ALMOST ANOTHER YEAR SUFFERING AND BEATING MYSELF UP THAT IT WAS "IN MY HEAD". AT THAT TIME I COULD NOT EVEN REMEMBER WHAT THE ER DOC HAD MENTIONED I MIGHT HAVE. I GOT THE ER RECORDS AND PULLED TN UP ON THE INTERNET. I RAN OUT TO MY Husband AND SAID " THIS IS IT" IT'S ME! I WENT TO AN OLD FRIEND WHO WAS MY OB/GYN AND TOLD HIM WHAT WAS GOING ON...HE SAID HE WOULD GET ME A REFERRAL TO THE MED SCHOOL IN NEUROLOGY. IN THE MEANTIME I WAS READING EVERYTHING I COULD FIND ON TN. ONE DAY I ACCIDENTALLY WENT TO THE TN MED ADVISORY BOARD AND FOUND THAT, AT LEAST AT THAT TIME, SOMEONE ON THE BOARD WAS AT THE MED SCHOOL...MY DR GOT ME IN TO SEE HIM. AFTER SOME TESTING ETC THE DOCTOR AT THE MED SCHOOL EXPLAINED HIS THEORY ON TN. HE LISTENED TO US AND EVENTUALLY I HAD A VERY SUCCESSFUL SURGERY FOR TN. ANYONE WANTING MORE INFO FROM ME PLS LET ME KNOW. IT HAS BEEN APPROX 2 YEARS AND I HAVE REMAINED ALMOST COMPLETELY SYMPTOM FREE! Name: joan 5 yrs ago i had shingles in ear which is called ramsey hunt symdrome, have lost hearing in ear and stay very dizzy have had surgery on 8th cranial nerves but continue to have problems have been told by medical dr. i will need to be put on medicine called tegretol or neurotin have apt. with neurologist in 2 days can anyone tell me about either of these meds.??? Name: Christopher F. This is a follow up to my previous storey (2nd February 2002) anyone reading that storey would understand that l was in terrible pain with GN. I was then on Neurontin and this was not helping at all. After a few weeks my Neurologist then put me Phenoytoin 300gms/ day and Amitriptyline 25gms/day. Within three days the pain have subsided to a bearable level but the Phenoytoin does make me feel very ‘spaced out’. I was prepared to put up with this until something better could be done. From writing the first storey l have received tremendous help and support from readers. Then main break through with help came almost immediately when the editor, Leslie Carroll contacted me and made me aware of the UK TN Association. I had no knowledge of their existence until then! I immediately contacted the TN Association for help. I was told they are aware of GN and do encompass it in the Association. I have now joined the Association and have been in regular contact with a lady dealing with email support. She has been enormous help to me. I was made aware of the TN book “Striking Back” and purchased a copy from the US. This book is excellent and l learnt so much from it. From this l decided that l would try and have the MVD operation, it was clear from the book and the Association that l needed to find one of the best Neurosurgeon in the UK specializing in this field. I obtained a name in London and asked my local doctor if he would contact him for me. This he did and l had an appointment two weeks later. On meeting the neurosurgeon he looked at my previous MRI scan results and said they were not clear enough to identify a problem, he immediately sent me off for another scan. This time the machine was much more sophisticated and would give high definition pictures. Two hours later l was back with the surgeon looking at the scan results and he could clearly see the problem. It showed a blood vessel compaction the 9th cranial nerve; this would be causing the GN. If l wanted to go ahead with the MVD operation he advised it should be done as soon as possible. He warned of the small chance of possible complications. I asked him all the questions as suggested in the book “Striking Back” Being satisfied with all of this l decided to proceed.
I had the operation 9th April 2002. It was successful and without any complications. There was a big looping blood vessel compacting the 9th nerve and whilst he was operating he also found a blood vessel compacting the 5th cranial nerve. This he treated the same way using Teflon strips to protect the nerves. As soon as l came round in recovery l knew the GN pain had gone, Fantastic feeling! The operation lasted 2 hours and in recovery for a further 7 hours. I was in hospital for 5 days. Todays date is 20th April and feeling better all the time. The operation left me rather sore and week but hope to be back at work in 7 days time. I would like to sincerely thank this web site for being there to help me back in February 2002, also all those who have corresponded with me giving good advice and support. I hope also that my storey will be helpful to others. I have learnt so much about this problem TN/GN and my advice to anyone suffering or considering an operation is to buy the book” STRIKING BACK” and join your local TN Association. They will give tremendous support and help. Name: Jill I am writing this in a state of reactionary depression. I'm trying to adapt to living with Trigeminal Neuralgia, and I wish I could say I was doing a better job of it than I am. The cause of my TN probably stems from an accident I had in January 1999. I fell backwards, driving my head into my chest with such force that I shattered the disc in the left jaw hinge and shoved it out of place. This was bad enough, but I then I ended up chewing against bone and nerve for the next four months. It was very painful, but my focus at the time was on my mother, who was dying at home - and I was one of her primary caregivers. After her death in May of 1999, I saw a dental surgeon who diagnosed the shattered disc. I underwent surgery in July of that year to remove the remnants of the disc. (Scar tissue is used as a replacement cushion in the jaw hinge.) It was a difficult surgery, with complications that included a clot in my leg and a pulmonary embolism in the left lung. In the Fall of that year, I had what I now know was my first bout of trigeminal nerve pain in the left cheek. I saw another dental specialist who diagnosed it as a saliva duct stone, and he showed me how to "milk" the gland in order to break up the stone and avoid further surgery. The pain went away, and I assumed the stone had dissolved. The pain returned in May of 2001, only this time it was much worse. All the classic things set it off: smiling, chewing, brushing my teeth, washing my face, etc. I saw another dental specialist who suggested it was Trigeminal Neuralgia and sent me to a neurosurgeon, who confirmed it. I went through all the standard drugs: Baclofen, Neurontin, Carbamazepine, Tegretol, and finally, Trileptal. Trileptal was the only drug my system would tolerate and which offered me relief from the jolts of pain. I was taking between 600 mg. to 1800 mg. a day to keep the pain under control. I was also diagnosed with Chronic Fatigue Syndrome, which I'm convinced is an offshoot from TN; a result of a stressed immune system from continual high levels of fear and anxiety over the unbearable trigeminal nerve pain. I have been experimenting with anti-depressants - Paxil and Wellbutrin - to try and address energy loss, but I can't say I see any difference. Since the side effects of Trileptal make it difficult for me to function normally (drowsy, lack of concentration and coordination) I decided it was time to try a surgical approach. After extensive research, I underwent a Microvascular Decompression procedure on January 17, 2002. It was a six-hour operation and complicated because the trigeminal nerve ran side by side with an adjoining artery and went under a portion of the skull where the neurosurgeon couldn't see it. He placed three "sponges" in hopes of addressing all the possible compressed sites. I spent a day in ICU and was then transferred to the regular floor. On the third day, I had two jolts of pain while brushing my teeth and washing my face. I wanted to die right there. My neurosurgeon assured me that this sometimes happens following the MVD procedure, which was comforting. Recovery was slow and difficult for me. Because of the loss of spinal fluid during the surgery, I was very unsteady on my feet and had the sense that everything was sliding to the left for about two weeks. I was also terribly depressed, which I was able to trace to the painkiller, vicodan. Once I discontinued it, I felt like myself again. Four weeks passed without any pain or Trileptal. I was beginning to believe the surgery had been a success when the first jolt of pain hit. They slowly returned, more intense than before. I saw my neurosurgeon on February 18th, and he sadly confirmed that the surgery failed. There must be compressed sites he couldn't see under the bone. He wrote me a new prescription for Trileptal, which was a real low point for me. (I had ceremoniously dumped all the bottles of drugs I'd taken before my surgery.)
I'm presently playing with different doses of Trileptal in an attempt to keep the dosage low, and I've started seeing a therapist to help me figure out how to live with TN and remain whole as a person. I'm on disability at the moment and fear that I won't be able to return to work. This is pretty alarming. I think of TN as my own, personal terrorist who shows up to torture me without warning. I never know when the assault will happen, but I know that it will. I have hated him. I have tried to hide from him. Now, I'm trying to find a way to make friends with him, to exist with his presence. I don't want to take my attacks personally, meaning I believe that sometimes, we are simply dealt a thing to contend with. It isn't a punishment, or a sign of weakness. It just is. The issue is about choice, how I choose to live with TN. I'm tackling this issue every day and hope to make peace with it. I'm 48 years old and have an incredible network of loving family and friends. I'm incredibly fortunate. But I'm also suffering, and none of these beautiful individuals can understand TN, hard as they might try. I'm sorry this message has such a sorrowful tone, but it's just where I am at the Moment. I was so sure the MVD procedure would give me back my life as it was - and I'm still reeling from the disappointment. I'm wishing all the best to my fellow "Neuralgians" and thank you for sharing you own personal journeys with TN - and for listening to mine. Blessed be. Name: anonymous I suffered with trigeminal neuralgia for 3 1/2 years with no periods of remission. Neurontin and other such medications offered no relief. Acupuncture would relieve the pain for several hours but it always returned. I finally had the glycerin rhizotomy performed by Dr. Ben Carson at Johns Hopkins in Baltimore. I awoke from the procedure absolutely pain free with no complications. That was almost a year ago and I am still pain free. Name: Carlo it was in january '01 when i first felt a sharp stabbing pain - while eating - on my left jaw. i thought the pain will just go away but it never did - it became progressively worse in the days to come. i would experience excruciating pain coupled with electric shocks on the left side of my mouth and cheek when the water from the shower head hits the left side of my face - even the wind would trigger a very painful attack. i had no idea of what was happening to me. i went to see a dentist but he couldn't see anything wrong from the x-rays that he took - i was begging him to do something for the pain, so he prescribed pain killers but that did not do anything for the pain either. i keep coming back to the same dentist and that's when i heard him say that i'm suffering from trigeminal neuralgia. he sent me to see an oral surgeon. the oral surgeon took a panoramic x-ray on my face - he saw a small bone chip under my left gum, he suspected that the bone chip could be causing my pain so he operated on my lower left gum and took out the bone chip for biopsy. the results of the biopsy came back and there's absolutely nothing wrong with mouth. i was getting frustrated because the pain was getting worse and no one seemed to know how to deal with it. by this time, i could not eat anything solid - anything i put in my mouth would trigger a painful attack. i ate only yogurt and drank juices - even that was an extremely painful experience for me. the pain is also keeping me awake at night - in the morning i would be weak from lack of sleep and at work it was just torture. i went to another dentist who performed two root canals on two of my teeth on the lower left of my mouth - that didn't do anything for the pain. i tried acupuncture treatments but it seemed to stimulate the pain even more. by this time i was really tired and frustrated and in pain. one day - a few months later - i entered a drugstore, i was browsing around when i glanced at a sign saying "pain relief and improved circulation". i was curious as to what this products might be, so i began investigate - they were all sorts of body wraps, head bands, knee and elbow supports etc. with bio-north magnets. so i bought a magnetic pillow liner for $25 - i was so desperate that i'm willing to try anything. i went home and i immediately slipped the magnetic pillow liner under the top part of my pillow cover. i rested the left side of my face on my pillow - after a couple of minutes, i just passed out. i woke up, maybe, two hours later and i have never felt so well rested in my life and the pain seemed to have disappeared - i was so surprised and joyful. the pain came back but it wasn't as bad as before. i then looked at the internet and researched about bio-north magnetic therapy. i found companies selling more powerful and superior bio-north magnetic products. i bought a powerful magnetic mattress liner, a more powerful magnetic pillow liner and a magnetic water jug, among others. six months ago i started sleeping on bio-north magnetic mattress liner and pillow liner - i also started drinking bio-north magnetized water - eight glasses a day. the restfulness that i get from my magnetic sleep system is just heavenly. at present the pain, that has tortured me months ago, is so faint, it's more of an itch than anything else - i can do anything normally once more. personally, i didn't expect these, bio-north magnets, to work so effectively in relieving pain but i'm glad that it worked wonderfully.
this is my experience - i hope that all pain sufferers find relief soon - i can empathize with all of you.
Name: "Raven" I am 26 years old. My pain began after going to the dentist. I was just going for my regular cleanings and check-ups. I was in no pain at all. My dentist told me I needed an old silver filling replaced. I agreed because he said I needed it done. He replaced it with a white filling. That night I was in horrific PAIN! I went bacl to my dentist and he told me I must have needed a root canal. I had a root canal done. I was still in pain. In the end I finally ended up having about 5 teeth pulled. Now more than a year later and after having gone to about 10 dentists, 2 oral surgeons, 1 neurologist, 1 chiropractor, and 1 pain specialist I am told that my pain is not tooth related. My oral surgeon diagnosed me with atypical facial pain and prescribed amitryptiline and neurontin. My neurologist said it was just migraines and upped my dosage of neurontin and amirtyptiline and added Imitrex. After about six weeks I was still in pain and gained about 20 pounds from the amitryptiline! Now my pain is unique from typical Trigeminal Neuralgia. My teeth, places where teeth have been pulled, and my head ache severely and constantly. The pain is generally all on my left side. But it can and will switch to my right. My deep, throbbing ache is constant. I do get occasional extreme sharp pains in the middle of my teeth. The Imitrex helped my pain at first. But I had to take 2 a day and pretty soon it stopped working. I am currently seeing a chirpractor. Hasn't helped head or teeth so far but has helped neck pain that I have had since I was 15. I was thrown out of a car in a car wreck where I suffered amnesia and a concussion. I was also knocked unconscious after a blow to the back of my head about 4 years ago. I just recently saw a pain specialist who agrees with my diagnosis-atypical Trigeminal Neuralgia. He wants me to keep taking Neurontin along with Ultacet and Effexor. I am still in pain but at least have hope because a doctor believed me and my fiance believes in me and he wants me pain-free as much as I want it. If it wasn't for his love, patience, continuing understanding I might not be here writing this letter. I thank God for Darrell every single day!Name: Sandie C. my story is documented earlier. Name: Jan I wrote about my experience with Trig. Neuralgia in 1999. I was in despair and felt doomed for life. I took Neurotin and it helped a little. I want to share with you an experience that I had with God that healed me and totally changed my life. Being in so much pain, I cried out, and prayed all the time. I called prayer partners on the 700 Club, Praise the Lord, Benny Himm Ministries and many more. I was in so much pain, I couldn't do anything else and it put me in the position to talk with God like I have never had before! After all, all I had was time! I started reading healing scriptures and praying all the time. I slowly got up one morning and when I started down the hall something started sprinkling from above into the top of my head. Being human, I looked up! Of course, I didn't see anything, but, what I was feeling felt so good! It continued down my neck and into my left arm and out each finger. The same thing happened to the other side. Next, it proceeded down my chest and stomach, down my left leg and toes and next my right leg and toes. When it left my toes, there was a powerful force that knocked me backward. At that moment, I was filled with more joy and peace than I have ever felt before!! I had no more pain!!! I ran through the house telling my family how good I felt and how joyous and peaceful I was. They were amazed because they had seen how much pain that I was in and how I couldn't eat or wash my hair, couldn't smile because it hurt so much. This happened to me in the year 2000 and I am painfree!! God is the same yesterday,today and forever! What he did for me he will do for you also!! We have already been healed by his stripes that he took on the cross. All we have to do is have faith and believe! Read his word everyday and pray and believe!! Get others to agree with you in prayer! God is so powerful and does not want you to suffer. With this disease, God is the only one to turn to. God Bless All of You and please let me know if you would like for me to agree with you in prayer or if you would just like someone to talk to or someone just to listen. God is more powerful than anyone realizes! Let him know your needs today!! Love and Praying for you all!! Jan Name: Patricia Unfortunately, due to this facial pain which I have suffered with at regular intervals for the last 6 years, I have had to leave my job, and my GP is recommending disability benefit! I blame this pain on bad dental work I had 6 years ago, so does my GP, I am taking legal action but this is taking forever! I am 47 years old and loved my job, I now feel I have been robbed of at least 13 years of my working life due to this problem. Has anyone else out there got the same thing and if so was it the same reasons I have?? Many thanks for taking the time to read this Name: John I was exposed to a direct spill of benzene on the left side of my face. My face started burning immediately, although my skin was not burnt it felt like someone smacked me. This happened in 1999 and I have had only one neurologist that tried to do balloon blocks, But he had to abort because he was afraid of doing damage to other nerves, He said he could not get through the facial bone. I have tried alot of pain medications but the pain never goes away completely. Right now I am wearing a morphine patch along with 3200 mg of neurontin a day, I having a hard time finding a doctor that wants to get involved with facial pain they seem to pass the buck to someone else. and because of this it is hard to get someone to believe you because they cannot see the damage. I was just recently turned down for workers compensation, a physiciatrest for the insurance company said that I was fabricating my condition and the Law Judge believed him over my doctors. If anyone can help in anyway I would appreciate it Thank You John See Name: Barbara I am looking for any comments from people who have had the Gamma Knife procedure for trigeminal neuralgia. What are the statistics for this procedure. Please help as I need something FAST! If you have had luck with other procedures, I would be open to hearing from you also. Name: Anne My pain started 7 years ago near an eyetooth implant. Since the implant looked good, the dentists focused on the adjacent tooth, which had a root canal. After two root canal surgeries, it was pulled. But the pain has relentlessly continued. It feels like packed/pressure pain accompanied by a frequent searing sensation. I am taking Neurontin, but it's not helping. A neurologist diagnosed it as atypical facial pain. Intuitively, I feel that the implant is the source of the pain and was wondering if anyone else is undergoing a similar experience. My inclination is to pull it - though many have advised me not to do this. Thanks for any help or suggestions! Name: Dawn I was diagnosed with TN about 4years ago, it started out with pain in my lower jaw, which I thought was dental, so there I went to the dentist for several visits, I had filling done, cleanings, xrays, and finally she decide to sent me to a neurologists, who then said it was TN. I was put on Tegretol which helped with in a couple days, and I was fine for a while bu then it came back and was really bad again, So the dose was increased, and the same episode repeated itself for a while. I was pain free for along time. Had an episode last September 2001 which put my dose of Tegretol up to 800mg twice a day along with 300mg of Neurontin, which I could not tolerate because of the side effects, blurred vision, nausea, dizziness. That was discontinued, but the pain then subsided a bit. I was pain free until now about three to four weeks ago march 2002, I have the most unimaginable pain that you can believe. The pain penetrates along the left side of my face, I can do nothing when I am in pain, my left side of my bottom lip goes numb and I just lose it for about three minutes. I really am upset with this I cannot eat, brush my teeth, wash my face and I am totally fed up with this I can no longer take it, I have had enough I plan on seeing sn acupuncturist soon , I will hope for the best, until then I pray that I can get relief, because, unless you have this you really cannot understand what it is like to have this pain, it is just simply unbearable. Dawn Name: Raymond I've had two MVD's for TN. The first was good for 3 years. The 2nd was a failure. Now they (Jannetta) says I have glossopharyngeal neuralgia. The pain is centralized in my jaw joint and almost never goes completely away. Most research I've seen has indicated that pain from this condition is in the throat, tonsils, ear, and tongue. I've scheduled another MVD but concerned that they may have misdiagnosed the condition. I would like to hear from anyone who has been diagnosed with glossopharyngeal neuralgia. Thanks! Name: "Jacinta" Had cyst removed( so i thought). Had terrible pains after surgery which got worse. Having a lot of pain in upper right teeth up to back of my eye to forehead and to back of my head. Trouble cleaning my teeth, talking, eating, brushing washing my hair, painful electric shock like feelings up right side of my face to back of my head. Had MRI scan done. Stated no abnormality in relation to right trigeminal nerve or intracranial structure. There was a little soft tissue change to right buccal region. Seen a neurologist who suggested episodic nature of pain & triggering sounds rather like trigeminal neuralgia although constant pain in the fronto-parietal region is not typical of this condition. He suspects this resulted in a form of neuralgia with triggering , which is akin to trigeminal neuralgia but unlike the usual variety, which results from irritation to the nerve root entry zone of the fifth cranial nerve by a vascular loop. Neurontin did not work that was taking 8x300mg. Now taking Baclofen. Having bad side effects, headaches, muscle aches, numbness/tingling feeling in hand and arms, nausea drowsiness. My claim for medical misadventure was accepted by Accident compensation. I am extremely frustrated & angry. It is very painfully & side effects from medication is just as bad. Name: "bole" Soy de nacionalida mexicana no se escribir ingles quiciera que si habia personas que escriban el espanol por favor que me escriban, tengo ya 2 anos con esta terrible enfermedad y no hayo que hacer ciento que me estoy volviendo loca las medecinas con el tiempo que esta pasando ya no ayudan y menos cuando tengo remmisines nada me ayuda puedo tomarme todas las medicinas de mundo y nada me ayuda no se me encuentro desesperada quicira que alguien me escribiera para poder alar de esta terrible enfermedad. Name: susan I am diagnosed with this disease about three weeks ago. I never knew pain can be so severe even though I am a pediatric oncology nurse myself. I felt like the inside of my brain was on fire when the pain hit. My family doctor told me it will go away in time. A comforting and yet remote statement. I did not want to be on anticonvulsive if all it does is to help control the pain. I tried the topical Zostrix which is very helpful. I am very thankful to find this website, never knew so many people suffer from the same problem. I also found a chinese herbal cream helpful. It is call 'ping-on go' meaning 'peace cream' It burns exactly like Zostrix and stops the pain. It is available in any chinese drug store. Name: Jodi My first trigeminal pain occurred in 1989 and my story follows along the same lines as others who have written on this website. Medications helped, but I couldn't tolerate Tegretol and Trileptal. Neurontin helped for awhile, but even after taking up to 2700 mg a day, the pain returned. In 1995 I had my first radiofrequency procedure and, though the right side of my face was numb, I didn't have pain. The pain returned in 1999 and this time the neurosurgeon did Gamma Knife surgery. It took several months before it took effect and then only lasted one year. Back to Neurontin again, but it quit helping after awhile. I elected to do the radiofrequency rhizotomy again. But this time, the procedure numbed my eye (need drops frequently for dryness) and did something to the muscle in my jaw, making it impossible to open my mouth very wide. Also left me with the stinging, burning, itching, etc. of anesthesia dolorosa which can be very annoying. Then after only four months, the trigeminal pains started coming back and I was put on Neurontin again and a new drug called Trileptal. I didn't like the side effects of either one! And even then the pain returned. Then last fall in the TN Newsletter I read about a chiropractor treatment called Upper Cervical adjustment. There is also information in the TN Handbook, "Striking Back." And an Upper Cervical Chiropractor was invited to give a paper at the TN Convention. I had tried chiropractors many times and they always made the trigeminal neuralgia worse. But this was supposed to be different, working only with the top two vertebrae and relieving pressure on the trigeminal nerve. TN reported that people were having good results with the Upper Cervical treatments. I found a website listing chiropractors who do this procedure and found a doctor close by! On November 11th I started the upper cervical treatments. The pain stopped! I have a wonderful, caring Chiropractic Doctor who is very interested in trigeminal neuralgia and how patients can be helped. I have needed only about five adjustments during this past four and a half months and my neurosurgeon has been able to wean me off all medications! The chiropractor checks me weekly and gives an adjustment only if needed, more frequently at first, but now my adjustment is holding for weeks at a time. Soon I should only need to pay him a visit if the pain comes back, indicating that I am out of adjustment. The only problem is this: Only about 1000 chiropractors out of 60,000 in the United States are trained in this procedure as it is highly specialized. You can go to the website below to find a list of upper cervical chiropractors in each state (and lots of further information on the upper cervical procedure). The only problem I seem to have left now is the anesthesia dolorosa, which is helped somewhat with Aleve and also keeping busy, which keeps my mind off the discomfort. That I can live with. But, as you all know, the electric like shocks of trigeminal neuralgia cannot be ignored! I hope you can find a chiropractor near you who does the upper cervical treatment and that it works as well for you as it has, so far, for me. Jodi
Name: t.n.sufferer I started on Tegretol 3 months ago, it worked for a while then the pain got worse. The doctor increased it to the 600mg a day it worked for a while but I had decided to reduce this myself because it caused tiredness and agitation in my speech. I told the doctor what I had done so he said go back on it. I've been using zostrix cream for 3month too but gave this away 2 weeks ago thinking it was doing no good. and it seemed very expensive. However the last couple of days have been very unpleasant pain in the nose and the trigger spot being on my nose end. I just purchased a magnetic mask to try but find this not helpful either, I'm willing to try anything and sometimes think I'm not very patient with any of them but will keep looking and hope I may go into this remission that I've about Name: Eve I was having a lot of pain in my upper right teeth and having trouble eating or doing anything with that side of my mouth. Went to an ENT and then a dentist and they discovered it was a neurologic problem and then it was discovered, per my symptoms, that it was trigeminal neuralgia. I have had pain on the right side of my face, teeth, trouble eating, drinking, talking, brushing my teeth, hair and having painful electric-shock like feelings going up the side of my face. I am trying different medicines and had a severe allergic reaction to Dilantin. I am hoping the combination of Trileptal and Baclofen works as I am extremely frustrated and angry too. It is so painful!!! Name: Sandie C. (refer to previous post) My story begins with wisdom teeth extraction surgery 12 yrs ago. refer to earlier posting. Tuesday 5th March 2002, I had some mandible biopsies taken. more than the surgeon intended to take. now a waiting the pathology results. Surgeons comments were that it was 'soft bone'. Others had wondered about osteonecrosis and this was raised 4 plus yrs ago, but then no oral surgeon would help me. I have had hot spots facially , left side only. low grade temps,
elevated wb counts, white discharge from left tonsil. facial oral
swelling redness around mandible left side. fatigue, nausea in week
leading up to surgery. burning bruising pain, facial numbness, pins ansd
needles sensations. high blood pressures with pain. engorged discomforts
orally in left lower quad.
Name: Ken I was 19 when I first experienced the "HELL"! Ten years of Tegretol/Neurontin cocktails destroyed my life. Started out on 1 teg/day, and by the time it was over it was a mixture of up to 30 anticonvulsants a day. They told me I had MS, they told me I had lime disease, I thought what next... What next was the more than I could have imagine. Not only do you have to deal with a pain "you wouldn't wish on anyone, but in your early 20's, no one realizes what your going through! It is now 1997. I lost my girlfriend of ten years, who by the way was studying to be a nurse. Came close to losing my job. Starting drinking as lot. Nobody can relate except those who have/had it. Checking the wind speed every day was regular part of my routine. I know some of you know what I'm talking about. I was seeing a neurologist at a small town hospital for the first 10 years. Then, the seizures got so bad I ended up a the emergency room at Freodert Memorial Hospital here in Milwaukee. I was unable to speak, malnourished, and dehydrated. That is when I was referred to a neuro surgeon. In 1997 the procedure was fairly new. My insurance changed at the end of the year. In 1998 I was responsible for 10% of all surgical Procedures. He gave my options, Microvascular decompression was the only choice. On Dec 21, 1997 I went under. I was out in three days! It changed my life. I don't think about it much anymore. I just happened upon this web site and felt my story might help someone. I know, I know, you need much more than a story. However, when I went through the "HELL" just knowing someone understood helped a lot. My surgeon even asked if I would be willing to talk to future TN suffers to explain the procedure. See, they don't even understand. Kmoon@milwpc.com Name: Kathie My story begins over 3 and a half years ago. I was eating dinner, and experienced my first shock. What a shock! I endured this for the next several weeks, when I broke down and went to our dentist. I thought I had a problem with a crown on the left lower side. The dentist took x-rays, came back and said there was nothing wrong with the tooth. Wonderful man that he is, he suggested that I had Trigeminal Neuralgia. I had never heard of it it before, so came home and looked it up in our medical book. It described what I was experiencing exactly! I tried to figure out what I was going to do next to get rid of this most hideous pain. After a few more weeks, I ended up seeing a cranial therapist. She was very good about helping me with the stress that TN creates, but she couldn't help with the pain. She then sent me to a neurologist. I was waiting for him to come in to the examining room, so I read a poster on the wall for Tegretol. It said that one of the side effects of Tegretol was liver damage. When the doctor came in, confirmed that I had TN, he then told me that if the pain got really bad (duh!) I should go to the emergency room and ask for a Tegretol drip, I decided No Way! I could not anticipate having a liver transplant somewhere down the road because I had damaged my own by taking a drug! I knew I had to find another way to get well. About this time, I was at a local specialty grocery store, and in front of the store there was a newspaper rack offering several papers on health. I picked one up, and read that there was going to be a Health Expo at our Convention Center. One of the featured speakers was going to be a doctor, an orthopedic surgeon, Dr. Lorraine Day, who had come down with a severe advanced case of breast cancer, and had cured it by totally natural means. I had to hear how she did it! My husband and I attended the lecture. Well, when she got up on that stage and told us how we could get well from virtually every disease by following the 10-step Plan that she devised to get well from cancer, I was all ears! My husband and I came home, went through our pantry and refrigerator, threw out everything that was not going to be good for our new lifestyle, and within a very short time of starting the new lifestyle, I was pain-free. TN does go into remission, so I'm not sure if it was doing that then, but I have been completely well for over 3 and a half years! Praise God!! After I got over the pain, I started to write others with TN, and other facial neuralgias, and I started to notice how many of us not only had TN, but we had some sort of digestive disorder. I was really wondering if there was a correlation between the two. I accidentally ran across a website called freedomyou.com, and had my suspicions confirmed. Under "Grains" on that site, it said that gluten in wheat products is responsible for MS, rheumatoid arthritis, schizophrenia, and celiac disease. Since MS and TN are so closely related, I threw in TN as being another disease caused by gluten. What happens with gluten in wheat products, and casein in dairy products, is that these 2 substances, (the 2 most mucus-forming substances that we can put into our bodies), make the interior of the small intestine, where 80% of our food is digested, so gooey that the food cannot be properly digested. (Gluten is from the Greek word meaning "glue".) Our bodies are made up of trillions of living cells, with atoms, molecules and enzymes. They need nourishment in order to thrive. Since the small intestine is not working properly, the living cells start to starve, and when the nerve cells starve, the cells of the myelin coating starve, too. The myelin is then destroyed due to starvation of the cells. The nerve is now bare, and arteries press on it, causing the pain that we have had, or are, experiencing. A lifestyle change of eating good fresh raw fruit, vegetables, nuts and seeds, helped get me completely well. I have also read all of Dr. Norman W. Walker, D.Sc., Ph.D.'s books wherein he states in his book "Fresh Vegetable and Fruit Juices": "In the case of nervous afflictions resulting from the degeneration of the sheathing of the nerves, the abundant use of carrot and celery juice has helped to restore these to their normal condition and thus alleviate or remove the affliction." Dr. Walker's formula is 9 ounces of fresh raw carrot juice combined with 7 ounces of fresh raw celery juice. If the leaf ends of the celery are used, the formula is 10 ounces of carrot juice combined with 6 ounces of celery juice. This juice needs to be made in a juice extractor, not a blender. My aunt, by marriage, had surgery for her TN over 7 years ago, doesn't experience pain, but continues to deteriorate. The vision in her right eye is diminished, she drools out of the corner of her mouth, as the surgery made it numb, her right hand shakes so badly that she can no longer write, and her loss of balance is severe. She has chosen not to do what I did to get completely well. I had some of those same symptoms, but they are completely gone now that I have changed my lifestyle! As I said earlier, TN goes into remission, and when it does, more myelin is destroyed. When it comes back, the pain is even more intense than it was previously. This is why it is so necessary to get to the root cause of this disease! I found pain to be a biggggggg motivator! If anyone would like more information, please e-mail me. I will be happy to help! By the way, I would like to recommend that everyone read NotMilk.com Name: Michelle I have numbness around my lips and nose and on the left side of my face (from chin to the middle of scalp and includes the left side of my tongue and the inside of my mouth), and pain on the left side of my face (jaw, cheek bone, eye sometimes, and forehead) since April 2001. It was needle like pain all over my face initially, then turn to chill/burning feeling, and pain into the bone. I suspect it’s from my dentist visit (local anesthetic or infection that damaged the nerve?). I have been seeing a neurologist and taking Neurontin and low dose of antidepressant since June 2001. The pain was immediately dropped to a more controllable level, and in November 2001, I felt that the sensation of my face has come back (a little bit). But since then, I don’t see much improvement. I tried acupuncture for a straight 4 days recently, and I want to tell everyone who suffer from facial neuralgia – it really works! For the first time in almost a year, I could live without the medications. The pain came back several days after I stopped acupuncture as the acupuncturist told – this was only temporary and I would need 30 visits to see a more permanent result. She also mentioned that the sooner you start acupuncture the better. I’m in the consideration to try acupuncture (30 visits), and will tell you if it really works or not. But first, I need to save some $. I would like to ask anyone who suffer from nerve pain and suspect it was the result of dentist work – have you heard anyone sued the dentist? Any success? I’m sure the dentist did not do that in purpose and I don’t want to screw him up. But, I suffered for almost a year, and there’s no guarantee that my nerve would ever recover. It’s like car accidents, if I hit someone, though not in purpose, my insurance should pay for the damage I made. So does the dentist. Name: Jim This all started back in October 01. I went through pain for about 6 weeks. After about 2 weeks I saw a doctor. The pain was described as: - extreme pain at rear of head on left side in the occipital area. Pain was worsened when I arose from a sitting or lying down position or turn my head left. Feels like getting stabbed in the back of the head. - over time pain spread to behind right eye (extreme throbbing pain) - also pain spread to top of head (scalp). Scalp was tender to the touch at this point My doctor sent me for MRI, MRA and CatScan. All cam up clean. He then sent me to a neurologist who put me on Neurotin. After one week the pain was gone. I never saw a diagnosis from the doctor...but the description for occipital neuralgia seems to be an exact match for a self diagnosis. Unfortunately the pain has returned in mid February 02. It has been 6 days so far. I have been on neurotin for 3 days w/o any relief. I'm hoping it works...in the meantime...this drug makes me feel like I have a strong "buzz". As an aside, I did have a bad root canal on my lower left side which required an extraction. In reading through articles, I'm not sure if this is related or not. If anyone has a success story for dealing with the pain, I would appreciate your input. This does suck. I'm hoping this isn't something I need to deal with for the rest of my life. Thanks for reading...Jim Name: Tony I started a new job some 2 years ago in a very small office with Room Air Conditioners installed. This new role involves a lot more speaking with clients by phone. I had previously always worked in large offices with ducted type models in mostly task focused roles with limited speaking involved. During the last 2 years I have experienced virtual non-stop pain in the jaws, behind the eyes, aching teeth mostly upper teeth, headaches, dizziness, light-headedness, shoulder and neck pain, sore ears, and a horrible feeling of permanently blocked sinuses and severe nasal pain. I have been checked by ENT specialists three times who can find nothing wrong. I have also been to Allergists and a Dental specialist has diagnosed TMJ and manufactured an Occlusal splint which I have been wearing at night for 18 months. I also saw a specialist who diagnosed Atypical Facial Pain. I am currently taking Amitriptyline and Valpro, but I really don't think they are doing anything to help. I have noticed that there seems to be an improvement if I'm away from work. I know the obvious advice may be to change jobs, but that is not really an option in a small town, and I would hate to quit my job and find out I still had the condition. Has anyone got any advice for me. I am particularly interested if anyone has any thoughts on a possible link between the cold air from Air Conditioners blowing on me and its impact on TMJ or Atypical Facial Pain symptoms. Please can someone offer some advice. After more than 2 years of constant pain, it has certainly affected my relationship with the family. I am not sure where I go from here. I just know I'm tired of being in constant pain and certainly don't want to spend the rest of my life like this. I am 41 Years old. Name: Mary Started mid 1991. Had TN over the years of left side of face. When pain started on right it was not identical to left so I was not assertive enough with doctors to stick with TN. Diagnosed as migraine syndrome, TMJ, cranial pain, six MRIs to rule out MS (which they still look for), 3 occipital nerve block, surgery on both jaw joints, glossopharangeal surgery at year and a half ago, and the pain continues. Lots of medication but the pain breaks through daily. Spent thousands of dollars pursuing the TMJ route, with all types of splints, novacaine mixture in roof of my mouth and way up where top of gum meets jaw (very painful). Amazing what we will suffer to get help. A neurologist here wanted me to go the Gamma Knife route, but TG for the internet now and learning this has not been perfected to date. Am now trying to get an appt. at the Univ. of Fla. Shands Neurological complex to see if I am a candidate for microvasular decompression surgery. I know now I began with classic TN, but now have constant pain and am considered atypical. I am on a lot of medications and worry what they might be doing to my system. If anyone who reads this was or is atypical and had this surgery, would you let me know how it went and did it help? I strongly recommend the book "Striking Back" as a resource. I would be happy to respond to anyone who is about to have occipital nerve blocks or glossopharyngeal surgery Name: Heather I have been through pain hell the past 4 years. I assumed that the pains in my face were related to the misaligment of my jaw--since I had some popping and clicking. Back then the pain was only once in awhile. I tolerated the pain with tears until I could take it no longer and went to an oral surgeon who gave me a mouth splint. That helped very little. Since then the pain has become severe and is everyday instead of once in awhile. It is completley unbearable during the week of my period--no amount of pain meds will work. I went to a neurologist this year after I snapped and returned to my oral surgeon because the face pain hurt so bad. He made the referral. There I had MRI and diagnosis of Atypical facial neuralgia. My pain is hot and burning with stabbing knife like pain along my left side jaw and below it. I become nauseated and can't stand even noise because it feels as if my head will explode. I cry and throw up because the feeling of pain is so strong it makes me ill. All the meds I've listed above are what has been tried (so far) Out of everything, the only relief I ever got was from the opiate drugs, which you have to be near death to get because god forbid you want pain relief--they assume and treat you like a junkie looking for a fix. By the way doctors--when a patient is really in pain--there isn't a high from the pain killers--at least I never felt one. Anyway--I'm now on acupuncture which of course is doing absolutley nothing along with all the other things I've been prescribed. Name: Meloney Hello, Finding this web site today was a tremendous blessing to me. I have often thought over the past 2 months: "If I could only talk to someone who has gone through this". The account of different experiences are amazing. It is so ironic that although our personal experiences with the pain of TN are somewhat different, our feelings and reactions are much the same. I would like to tell you what has happened to me, and also ask for some guidance. My first episode occurred Saturday, December 1, 2001. I awoke in the early morning hours with what I thought was a terrible toothache. I assumed one of the teeth on my lower left side had abscessed. It throbbed throughout the morning until it became unbearable and the pain ran down my left arm causing me to want to "draw it up". I have always been told that I have a very high tolerance for pain, but during those hours, I was just beside myself, pacing and moaning. I couldn't be still and even though the pain was excruciating, I couldn't cry. Out of desperation, my husband called my mother who immediately came over. My mother then called our dentist at home. He called in a prescription for Loratab to get me through the weekend and told me to come to his office on Monday. My dentist also said what I described sounded more like a facial neuralgia than an abscessed tooth. By noon of that same day, the pain went away. I told my mother and husband how foolish I felt. I apologized for my behavior and for disturbing my mom. I couldn't believe that the intense pain which had rendered me helpless for 3 hours had just disappeared. I enjoyed the rest of my Saturday. The next day on the way to church, the horrible pain returned. I began taking Ibuprofen every 2 to 3 hours so that I could function. The pain would come and go, lasting for up to an hour each time. I assumed the Ibuprofen was helping and continued to take it often, trying to stay "ahead of the pain". This pattern continued for about 1 week, until the pain diminished to a dull ache, which I could easily tolerate compared to the excruciating episodes. When I saw my dentist on Monday, x-rays and a lot of tapping revealed perfectly healthy teeth. I was very surprised by this news. Once again, my dentist mentioned TN. Since the pain had decreased to a dull ache and with the Christmas holiday approaching, I did not seek further medical attention. Thankfully, the rest of December went well and I had just that same "dull ache" to contend with. Then, on Wednesday night, January 16th, that dreaded, agonizing pain returned so suddenly, knocking me literally to my knees. It continued to reoccur every few hours over the next 2 days. On Friday, I saw a neurologist. My neurologist said the description of my pain did not fit "classic" TN pain, but he started me on 300 mg. of Trileptal twice a day and ordered an MRI. The MRI was normal, but the pain continues to occur daily, every hour or so. There was little, if any, relief after taking the Trileptal for 2 weeks. My neurologist suggested I double the dosage of the medication. However, I cannot do this and still function. I am continuing to take the 300 mg. of Trileptal twice daily and Ibuprofen. This may be futile. I really don't know what is helping, if anything. This past week has been a living nightmare for me and my family. I do fairly well during the day, but the nights are horrendous. Now, I hate to even see the sun go down. I cannot lie down, or even recline without the awful pain pulsating through my face and down my arm. It feels like there is a lacerating pressure bearing down on my face. Last night, I could not even sit down without the pain overwhelming me. I paced around the kitchen for most of the night while my husband and daughter slept. Around 2 a.m., I was able to prop on the sofa and doze for an hour or so, but the pain never left me. Today, I am at work. Remarkably, I feel fairly well. Just a few intense twinges so far. I seem to do much better when I am moving around and in an upright position. But there are times when nothing at all will bring relief. I have had to stop driving and pull off the highway because of this pain. This is truly a mysterious condition. I know that I cannot continue to function this way, without sleep and in pain so much of the time. As many of you related, it is so difficult to explain this to other people; husband, child, friends, boss, coworkers, etc. It is not really a visible condition, so they expect me to carry on as usual. And, usually I am an extremely outgoing person and like to stay busy, going and doing. As for the specifics of my life: I am 39 years (turning 40 in April) and I have a wonderful husband and a precious daughter. I work as a civilian for the Air Force and have a daily 2-hour commute. I also care for elderly grandparents and am very active in our church. I am trying to carry on as always, but it is just so hard. I now have the overwhelming desire to just hide in my home and not come out. But, I know this is ridiculous. I must work, I must go to my church, I must see my extended family, I must go to Wal-mart, I must carry on! Certainly, my condition doesn't even begin to compare with some of the trials others are going through. My main concern is for my precious daughter and my husband. I want to be a good wife and mother; to create and maintain a home that is peaceful and joyful. The pain I am feeling makes me less than joyful, to say the least. The quality of life in our home is already declining. My little girl just turned 3 years old and doesn't really understand. She crawled in bed next to me one Saturday afternoon when I was still able to lie down (and for me to be in bed on a Saturday afternoon is like going to the moon, but I just had to lay my head down for a while) and she said, "Are you better now Mommy? Daddy said a prayer for you; you should be better now". She is constantly hearing, "Be careful with Mommy" or "Mommy doesn't feel good" or "Don't touch Mommy's face" from me or my husband. I really don't want this to be what she remembers from her childhood. My husband and daughter deserve my best, as of course does our Lord. I don't know what God is doing, but I do know He is in control! If you could offer me any advice as to how to deal with this better, how to manage the pain, and how to SLEEP, I would greatly appreciate your guidance! Please, anyone, feel free to e-mail me. I would be so glad to hear from you. We need to continue to reach out to others with TN. I feel like this web site is a wonderful ministry! Thank you again, so much! May God bless you all with sound health, complete well-being, and His perfect peace. Meloney Name: sandie Following wisdom teeth extraction surgery 12 years ago its been... left sided facial fullness, with episodes of swelling and redness facially and orally involving the left lower quad. Just returned home from the accident and emergency dept at our local hospital for what doctors think is osteomylitis, infection of the jaw. Pain, swelling orally facially, elevated white blood count, temperature, quad hotter than other 3, high dangerous blood pressures with attacks, pins and needles/numbness sensations oral/facial, lump next to x wisdom tooth site, engorged left cheek, white toothpaste like stuff pouring out from left tonsil, fatigue. Suggestions in the past have been... Atyp trigeminal neuralgia as I have had tn pain along side burning bruising in natur pain stuff, NICO- nercrosis /infection, RSD facially orally, erthromeleglia, a melkerssons-rosenthal reaction/ reoccuring strep infections-cellulitis/ lymphoedema, TMJ, glomangioma tumor related as I have had these, a psychogenic oral problem, ha really?. Recently also come out with 'erythema mirgians' on the tongue. Name: "PJ" Since my story parallels others in many ways, I will only give the essence. I am uncertain, as I suppose many are, of the actual cause of the origin of this disease. My belief is that it came from a chronic infection in an improperly done root canal, but I can't be sure of that. After multiple dental procedures, some of which were probably related and others that weren't, I have had a year now of chronic facial pain. I had a total of three root canals and six extractions. With every procedure and test (from dentists, oral surgeons, endodontists, internists, and neurologists), I thought my story would end, and then I could go on about my life as it was in the past. I have read this site for about nine months now, and I think I have been in denial that this illness would stay with me permanently. Of course, I still pray that it does not. I did finally find an endodontist who was realistic with me, and I found that a comfort even though he admitted he had no easy answers. I have been on Neurontin for about nine months. I am not sure if it helps the pain or not, but I keep taking it partly in fear that life will be even worse if I don't. I tried Elavil and thought it helped for a while, but then its effectiveness seemed to wear off, and I disliked the side effects. I tried Trileptal but had somewhat serious (mostly rash and itching) side effects, and my doctor took me off it for fear that the side effects would only get worse. He admitted that he was not confident it would help any more than the Neurontin but thought it worth a trial. I have a few questions to pose to those of you who have dealt with the issue also. Has anyone had success with Depakote? Is my experience of the Elavil helping and then not seeming to help typical? (I stayed on it for about three months. Thought it helped by the time I had been on it a month, but then it seemed to quit helping.) Is there anyone who used to have this type of pain (classic atypical facial pain as described on this site--burning, aching mouth all the time, primarily on one side) who still reads the site and can be hopeful that it will ever go away? Should I just learn to cope and resign myself to never having a normal mouth again? Thanks to all of you who have put this site together. I am in the process of reading many of the old posts, and I do find comfort in knowing I am not the only person in the world with this mess going on in life. I am sorry for all of us. Thank you, PJ Name: Herb Herb has experienced this problem since 1988. His last procedure at Hopkins was in July 2001. It's hard to believe that he was jitterbugging on New Year's Eve. Pain came back-it's violent and it won't end. It's completely different now as it isn't shocks but deep pain. Did anyone ever experience this who has TN. Of course, his speech is affected. He has always been an up person (71). We have been in touch via email with his doctor at Hopkins who feels it isn't TN and should be seen by oral surgeon. Before we left for our Florida trip, his dentist took xrays but didn't note anything. I'm going to open the yellow pages and call someone here in Fort Lauderdale area. Herb feels very strongly that it is a TN problem. Of course, the meds aren't helping. I hope someone has an answer. Name: Christopher F. I am now suffering my second bout of Glossopharyngeal neuralgia (GA) and almost incapacitated by the pain. My story starts mid August 2001. l was having a particularly stressful time at work and very little sleep. One morning l notice a strange sensation in the middle ear left side. It soon went and l took no more notice. Driving home that evening and going slowly through town, thank God, l yawned and was hit by the biggest pain l had ever known. It occurred in my middle ear and it was, as often described like a huge electric shock.l hit the brakes hung onto the steering wheel and screemed. It lasted for about 10seconds and then gone with no after effects. l arrived home and told my wife, who is a nurse and she told me to go and see the dentist, whom l hadn't seen for 3 years! l had another bout the following morning at breakfast which alarmed the whole family as glasses and food went everywhere. l proceeded to see the dentist the next day and told him my symptoms he xrayed the teeth and found all ok, said l should see the doctor asap. Next day l was at the doctors, having had several more attacks. These l was now dreading. My regular GP was having a day off and l saw his stand in. I explained my symptoms to her and she asked to look down my throat. l new by now that when l opened my mouth wide the pain bolt would hit so warned her to be prepared for this. sure enough it happened, l rolled over in a ball and she managed to jump out of the way, it was all over in 30 seconds. She immediately identified the possible problem and Trigeminal neuralgia and suggested two forms of medication. One being an anti depressant, the name of which l have forgotten and the other being Tegretol. She thought l should try the anti depressant. The pain attacks were increasing in severity, starting in my lower throat and tongue and then whacking me in the inner ear with a massive electric shock like pain. The whole process would gradually start again with a small prickly sensation in my throat and minor shocks up into my jaw and tongue. l soon began to learn not to swallow to harshly, not to open my mouth to wide, eat soft foods by sucking them down, speak quietly and only take warm drinks. Anything other than this would cause the lower throat sensations to erupt to my inner ear as explained. After 3 days and increasing attacks l returned to my GP and he agreed with the diagnosis and changed me to Tegretol. He also advise me to see a neurologist. We made an appointment for two weeks time. By then the pain had subsided and virtually gone away. l assumed the Tegretol had worked. l explained everything to the neurologist and he identified the problem a Glossopharyngeal Neuralgia. He suggested l should stay on the Tegretol for another 4 weeks. He also said that if the problem persists it may mean surgery. He suggested l should have an MIR. This l did a week later and l was told the results seemed ok. Two weeks later we where off on holiday to lreland for 10days The night before leaving l developed a terrible itchy skin all over and couldn't sleep. In the morning l felt shocking and l noticed a rash on my trunk, l thought caused through scratching. l also felt l had the flu coming on. On arrival in Ireland l couldn't eat or drink and all the symptoms remained so off to the doctors l went. There was a locum on duty from the out back of Australia. He thought it could be a reaction to Tegretol and should come off them and to see how l get on, he also took a blood sample. After 2 days l started to feel better. The day before we returned the 'Irish' doctor phoned to say that my Liver function was high and l could have hepatitis and to see my GP immediately on return. He also phoned the results through to him. Back in the UK l contacted my GP who had the results form Ireland. He took another blood sample and he was sure what was happening to me was the result of Tegretol and told me to stay off them all together. He contacted the Neurologist for other medication if required. l was having no further problems with GN. A week later the blood test showed the Liver function was getting back to normal and a further on showed all ok l was fine again and all back to normal, eating, drinking. No pains and no further side effects. Until now! On a Saturday 12 days ago l was rushing to get out in the morning due to a very busy day ahead when l noticed a twinge in my left ear which immediately reminded me of GN. For fear of this l rushed upstairs and found the Tegretol and started taking 3 a day as before. ALL seemed ok until Monday morning when l was having a drink at work when l had another minor hit in my throat and left ear, the next day l was finding rashes starting on my arms and getting very itchy. Off l went to the GP again, he found the notes from before. He told me to stop the Tegretol and go onto Gabapentin (neurotin) 300gm three times a day. As last week went by GN was getting worse, my throat and tonsil area was continually hurting with minor shock waves to the left ear. By Thursday speaking was becoming very painful and the shock to my ear where more intense. l phoned the Doctor on Friday and he increased the Gabapentin by 300gms a day. The weekend l was in terrible almost persistent pain in all areas as before. This was just bearable as l was not getting the severe incapacitating shocks to the ear as l was in August. The GN this time seemed much more permanent. Last time it was mainly severe shocks this time l am feeling it with me all the time. Monday this week l went back to work and tried to avoided speaking. By now speaking and drinking where sending more severe shocks to my inner ear. This evening l had a dinner meeting but had to come home early as my voice went. Tuesday, back to work with no voice and l was twitching most of the day due to shock waves from my lower tongue to my left middle ear. Tuesday evening l knew was in for big trouble. The feeling in my throat and ear was by now the same as in August, l new the big shock pains where about to start. l reluctantly went to bed, after l hours sleep l was awoken with the first. The pain was unbearable, thank God it only last for a few seconds. The picture of The Scream depicts it all. For approx every 30 Mins l was being hit with this and smaller shocks in between most times when l swallowed, all starting from the throat area to the inner ear on the left side only. l was up all night leaning over the warm aga for some comfort but no relief. The doctor was contacted yesterday and he increased the dose to 600gm three times a day. Today is Thursday. Wednesday l could not eat, drink or speak without sever pain. Today is much the same, although l have managed some warm soup and tea. Whilst typing this l have had 6 major shocks in my left ear when l swallowed. One of these lasted longer and caused me to roll on the floor to try and ease the pain. Sleep is almost impossible and l try to avoid. Waking with GN pain is my worst nightmare. l do not have a lot of faith in the Gabapentin pills, or is my GN uncontrollable this time. It is much more persistent. Is anyone else out there suffering with GN? Has anyone had the operation for this? was it successful? Is there any other medication? PLEASE HELP IF YOU CAN any information would be most helpful Many thanks - Chris Name: "Em" Years ago, despite my complaint of discomfort, a dentist denied that anything had gone wrong during a wisdom tooth extraction. Over the years, subsequent MD's and dentists of all specialties "couldn't see anything wrong." I had numerous x-rays, scans, MRI's - everything was said to be normal, but my pain went from minor to moderate to severe, constant nerve pain. I also had ear and neck pain and swelling. 20 years AND many DOCTORS later, an oral surgeon told me the bone surrounding the wisdom tooth had been fractured during the extraction. This resulted in a large amount of scar tissue deep within the WISDOM tooth socket. (The one area other dentists would not operate near.) New scar tissue has the consistency of rubber cement. The dental nerves became ensnared. As time passed, scar tissue tends to harden and shrink, trapping and impinging on the nerves. I know this explanation of the pain is true. After one 20 minute painless surgery to remove the tissue within the wisdom tooth socket, FOR THE FIRST TIME IN 7 YEARS, I DID NOT FEEL AS THOUGH I HAD STRAIGHT PINS STABBING MY DENTAL NERVES. If he had not removed the scar tissue, this horrible pain would only have gotten worse and worse. Name: traci Name: Joey I have 'finally' been diagnosed w/TN. My story starts w/long term dental experiences from extractions and deep cleaning and moves to two MRI's with a CAT Scan in between and multiple doctor and chiropractor visits (which I have now been told to stay away from any cracking above the neck area!) And I heard everything from I'm experiencing 'phantom pain' to ??????????. I thought possibly I was just going crazy! Most recently I was prescribed carbamazepine 200 mg/day. Does anyone have any experience w/this rx. My specific concern is a side effects. My situation is a sensation that I feel in the area of my liver. If anyone is willing to share their specific experience w/carbamazepine I would very much appreciate it. Also, if you were prescribed something other than carbamazepine for TN and whether you had positive or negative results from that. Thank you very much, Joey~ Name: Ruby My husband has been in constant pain now for 16 months. The right side of his face, his right arm and leg. He has had MRI's, CT Scans, EMG's, Carotid artery ultra sounds and the whole works. He has been on Neurontin, Tegretol, Mirapex, Sinemet, Aggrenox and now on four coated aspirins a day. If he takes a pain pill it gives him some relief for a short time and also makes him want to sleep. He also has been diagnosed with Parkinson's disease with a tremor in his right hand which has not gotten worse in two years. Is there anything short of surgery that can help this kind of pain? We will appreciate any input that you can give us. I have about exhausted all that I know to try and get him help. He has even had acupuncture which helped for a short time. He is 73 years old. Thanks. Name: DANI I would like to thank you for all the information on your Web Page. I have suffered from Trigeminal Neuralgia for 8 months. I have been on many drugs, but have had many of the side affects. After reading the information on Capzasin, I went out last night a bought it has worked for me so far. I have had no attacks at all, I do still have numbness on the left side of my face, but the pain has gone. Thank you. Name: "blythewood" I believe it was 6 or 7 years ago that I had TN. I noticed that the shower spray hitting my chin was causing pain in my temple, and even a gentle wind blowing across my face was causing excruciating pain. I have a great tolerance for pain and I waited perhaps 3 months before I sought medical help (this is nothing! I waited 6 months before seeking medical help for full-blown, debilitating Graves Disease) while the symptoms escalated in intensity. The facial and eyelid tics were not present initially, but presented perhaps in the last month before I finally visited the doctor's office. By that time, the pain in my temple was fairly constant and unrelenting. My doctor prescribed Tegretol and related some horror stories of patients who had resorted to surgery to correct the condition, with no relief. They were apparently doomed to a life of chronic and debilitating pain. My episode resolved fairly quickly (thank God!) in response to the medication, but after reading some of the information on this condition, I am somewhat alarmed to find out that it can reoccur spontaneously. I guess I am curious how likely this is. Name: Melanie I had dental work done in Sept 2001, In Dec. I started having pain, and thought it was due to my dental work as in abscess of several teeth. I put off going back to dentist because of my husband's loss of job meaning loss of dental insurance. I then would take 1200mg of Ibuprophen for relief and this helped for a while, then I went to darvacet which lasted til Jan.21,2002. I decided insurance or not I had to get to the dentist. On Jan. 22 I went and he did his exam and said I had very healthy teeth, and felt I had a severe case of sinus infection, so he gave me 2 antibiotics and laracet plus for pain. I then 1 day later with no relief went to a MD says no sinus infection to be seen in x-ray, she gives me a demoral shot for pain and I went on my way. Then I go to my reg. MD on Friday Jan. 25 and he gives me more antibiotics and more loracet plus and schedules me a cat scan of the sinus, and gives me another demoral shot and sends me on my way still in SEVERE PAIN. Still in Pain, and taking all of this medication and I am not one to take a lot of meds. I have an anxiety attack on Sunday morning about 2:00 I go to the EM at this time they go ahead and do the sinus scan since I was already there. Monday 28th My Dr. says no infection in sinuses and schedules me to a neurologist. So today I go and she tells me I have TN. she gives me Tegretol 100mg. she says I need to take 100mg a day(a 1/2 2 times a day) I took the 1st 1/2 about 1:30pm and the other 1/2 about 5:00 this seem not to help, so I've took a loracet plus at 6:00 seem to help very little. What would anyone suggest for me!!!! Please help Would anyone suggest the surgery they have for this or not? Please e-mail me back Thank you Melanie Name: Michelle I was told I had TN in Jan 2001. After months of going back and forth to the Dentist, Endodontist I was finally referred to an Oral Surgeon who said I had TN. What a relief to know I was not going crazy. I went months with little sleep and with little to eat and drink. I actually think I had my first attack a year before and went in and had a root canal after a month of constant pain it eventually went away for about a year and then returned full blown. I have had several root canals and then those pulled out trying to find the root of the problem. The Oral Surgeon put me on tegretol which didn't seem to help much. Then referred to a neurologist who put me on Trilipital and high doses of pain medication. I was to a point that I was not able to function very well from day to day. I am 31 years old and a mother of 3 girls and presently expecting again. I had the MVD on March 20, 2001 and have been pain free until about a month ago I started feeling a mild pain while brushing my teeth. Since then the pain has gotten worse. Not yet full blown but as the days go by I get more and more pain and feel them harder a little each day. At this stage I am scared I am 7 months and don't know what I will do if this breaks out full force while being pregnant. The fear of having to go through this again scares me to death. I would do the surgery all over again. But I know there is little to be done while I am pregnant. I am sure I have left a lot out other than remembering the pain that part of my life is a big BLURR. All of the medication and the stress of it I guess I have blocked it out. If anyone has any information I would appreciate it. and if I can be of any help please let me know. I thought I was a success story until now. Name: Maria I had 2 nerve blocks the 1st last 2years of pain free, the second 11 months of pain free and the last treatment surgery Microvascular decompression and that lasted 10 months. I was told by the surgeon that the procedure would give me a 10 year pain free guarantee. Now I am back to Tegretol which helps for now. Name: Tania Three days ago I thought that I had pulled a muscle in my eye, it has swelled everyday to the point the I can not open my eye, or move it without excruciating pain to go along with it. I have a blinding headache, my face hurts, and I feel that I have no answers as to what is wrong with me. Name: Barbara Help! I started having stabbing pains on Dec. 4th of 2001 I went to Dentist, Orthodontist and Oral Surgeon. They did not recognize the symptoms nor did they relate it to prior Root Canals in 1993,and it took a medical Dr. in ER to diagnose the pains as Trigeminal Neuralgia. He immediately prescribed Tegretol which has helped but I live in fear of another attack. To get the pain calmed down in the beginning the M.D. also prescribed Vicodin, Advil and percocet. I was a complete zombie. So I experienced and now have it down to 600mg per day of Tegretol and it feels like the pain may be leaving. Do I just go on and wait for another attack or keep taking the medication? I am tired, I stagger, I don't try to drive and life is miserable. I've had shingles, breast cancer, extensive dental work done including braces, I did not mention that I am 74 years of age. Prior to the Root canals in 1972 I had not been to a Dr. for anything except the birth of three children. I suppose I should not be complaining but I've never suffered such excruciating pain and don't want to have it again. Surgery has been suggested? Is it too soon? Name: CHRIS about 6 months ago i was diagnosed with tn. it all started with a dull pain on my molar. over the next two to three days it progressed to the point of me crying and sobbing like a little baby. this may not not seem like anything but considering that i am 6'3 350lbs and i usually won't cry for even a good movie. as of jan 14 i am seeing a neurologist for the first time and hoping to get results. Name: Ryan Name: Pam My husband was "temporarily" diagnosed with TN yesterday, after 2 days of such pain, I couldn't stand to watch him go through it. He is a 43 year old man....under a lot of stress, which I am wondering if that could trigger these attacks. Our doctor wants him to go to a Neurologist on Monday for some tests, and as of right now, he is simply drugged up so he isn't in pain.....can anyone tell me what we should expect out of this horrible disorder? It's only been 3 days now, and neither of us are ready for what may be coming. Does anyone have any idea how frequent these attacks are going to be? Any suggestions or advice would be greatly appreciated....also, is there anything specific we should request or ask of this neurologist? Thanks so much.....and all with this disorder...God Bless. Name: Debbii Approxamately 6 weeks ago in November 2001, whilst in work, I started getting pains in the right side of my face. Here is a shortened diary of my pain and frustration over the following weeks. I would love to hear from people who have experienced what I have because I don't know what is really happening to me, I am a lone parent with 3 children and 2 jobs and this is affecting my life so bad. Monday: Pain under my ear, at edge of jaw. Thought it might be my wisdom tooth, tried to make an appointment at dentist but they were closed. Over night pain got worse, still unsure whether it was coming from my ear or mouth. When pain comes I feel as though am paralyzed, afraid to move, like all your nerves are going to burst through your face. Taking paracetamol and clove oil. Tuesday: Managed to get an appointment with the dentist. She checked my teeth and said they were fine. She advised me to go to the doctors as it could be an ear infection. Over night the pain continually got worse but was now coming more from directly in front of and under my ear and down the top and bottom of my jaw. Pain comes in bursts, like a wave, as it goes it leaves a numbness and pressure in my ear. Pain seems to be triggered if I eat or drink warm drinks. Wednesday: Went to doctors who noticed redness in my ear and said it maybe a type of boil. Was given Flucloxacillin, co-codamol and Ibuprofen and signed off work. The painkillers did not help. Still using clove oil. Thursday: Went back to doctors as pain now intolerable. Was given a prescription for stronger co-codamol and said I could double Ibuprofen. This did not alleviate the pain. I look awful, dont't want to see any of my friends. Stopped using the clove oil as a large ulcer appeared at top of my gum. Friday: Went back to doctors. He said swelling in my ear and face gone down. Thought that the ulcer in my mouth was Gingivitis, even though I told him it was a result of repeated use of clove oil, and so gave me 3g Amoxycillan sachets and told me to continue taking the diahydrocodeine. The diahydrocodeine made me so drowsy that I slept all day, but I got some pain relief, as the pain never comes when I am asleep. Also taking Ibuprofen. Monday: Went back to doctors. Told him pain not really being controlled by painkillers. He said my ears were clear, and the ulcer had cleared up. He said he noticed my jaw was moving a little irregular and it could be that or a neuralgia. He prescribed Diclofenac tabs E/C 50mg, as well as diahydrocodeine. That evening pain seems to get worse and occurring quite regular. No pain relief from the tablets, pain seems to occur more in the evening and first thing in morning. Spend most of the evening in tears. Unable to eat, feeling very nauseous. Can now tell when pain is going to happen. First starts to ache and then all of a sudden sends immense pain down top and bottom of my jaw, like am being stabbed. When the pain attacks subside, after 3-4 minutes, am left with a blocked aching feeling under and in front of my ear. Tuesday: Returned to dentist and begged her to find something wrong with my teeth so that it could be fixed and pain would go away. She said she agreed it could be something to do with my jaw or neuralgia. She wrote a letter to take with me to the dental hospital. Was x-rayed at the dental hospital. They banged and tested my teeth and said there was nothing wrong with them. They mentioned it could be Trigeminal Neuralgia. They took a blood sample and started me on 3x100mg carbamazepine. I took the first tablet at 4pm and I did not notice any relief. I took the second tablet at 11pm, along with diahydrocodeine. The sharp stabbing pains did stop, but I was left with the dull ache. Wednesday: Whilst I have relief from the agonizing sharp pain I was left with a dull ache. I rung the dentist and demanded that they remove my tooth. They agreed and reluctantly took out my top right wisdom tooth. By Wednesday evening I was completely pain free. Thursday-Monday: Back to work. Taking 3 carbamazepine tablets a day. Pain free. Tuesday 4th December: Back to dental hospital. More x-rays. Told me to start reducing amount of carbamazepine. Wednesday 5th & Thursday 6th: Took 2 tablets - pain free. Friday 7th: Took 1 tablet in the morning. At approx 5 p.m, during an important work meeting, had sudden unexpected pain. Was the same as before - at first there was a pressure then excruciating stabbing, burning pains in my face, coming like a wave. Felt as though my head was going to explode. As the pain goes it leaves a dull throbbing pain in front of my ear. Was very embarrassing , work colleagues looking at me as if I were mad. Was sent home, felt so unprofessional. At about 5.30 p.m. I made a cup of tea, and after the first mouth full I got another pain, and then another one about 2 mins after. Took a tablet. Got another pain about half an hour later then no more. Very worried about going out, as feel vulnerable as I don't know when the pain will happen. Saturday 8th: Took 1 tablet - pain free all day, although had a dull earache pressure pain on and off throughout the day. Sunday 9th: Didn’t take a tablet today. Pain free all day. Still getting occasional dull pressure feeling in front of my ear– not really painful just annoying. I can hear a kind of click or a pop now and again in my ear. Monday 10th: Back in work. Didn’t take a tablet in the morning. But when I was eating my lunch I got a pain attack. Had another sharp pain about 2hrs later, so took a tablet. Sent home from work. Still having ‘ear ache’ on and off – just a pressure feeling, like being blocked, then a pop, then ok. Tuesday 11th: Returned to dental hospital. The Doctor told me I would be sent an appointment for an MRI scan but he wouldn't tell me why, just said to check everything was ok. He also said at my next appointment I would see 2 consultants, but don't know what they specialize in. He said that it is extremely unusual to have Trigeminal Neuralgia at so young an age. He told me to go back to taking 3 tablets a day. Am worried sick - if it isn't Trigeminal Neuralgia then WHAT IS WRONG WITH ME? Took first tablet at lunchtime. At about 5pm, whilst eating my tea, had 2 ‘pain’ attacks, The second about 10 minutes after the first. Same as before – sharp, stabbing, agonising, coming in waves, lasting about 2 minutes each. After ‘pain’ goes am left with a dull pain in front of my ear. Took 2nd tablet of the day. Took 3rd tablet before I went to bed, didn’t get any more pains. Wednesday 12th: Took 3 tablets today. Avoided drinking very hot cups of tea, didn’t get any ‘pains’. Thursday 13th December 2001– January 1st 2002: Took 3 tablets a day – no ‘pain’. January 2nd: At about 9p.m experienced a ‘pain’, and then again at about 11p.m. and then about 5 minutes later. Was not eating or drinking, don’t know what triggered it. The ‘pain’ was the same as before. Can’t speak or move during the pain. Am very tearful, as due to go back in to work tomorrow after the Xmas holiday break and am now worried that this is going to happen in work again. Took my 3rd tablet of the day and went to bed. January 3rd: Back to work, took usual 3 tablets, no pains. Received 2 letters from the dental hospital - MRI scan (date 22nd January 2002) and appointment with consultants, (24th January2002)
January 4th-today, January 5th:
No pain. Feel frustrated that I don't know what's wrong with me and whether this is the end of my life as I know it, and scared because I don't know whether I can hack the suspense of wondering when or if it's going to happen again. As a single parent I am also worried sick about the diagnosis that the scan could show. Name: Lurlene It was in 1978 that I fell victim to this disease, I remember it was a very hot day around 120 degrees and I was pulling old wire from a fence. My husband sang to come sit down for a spell. I ran over to the Toyota and jumped onto the running board in the process, I hit the top of my head on the doorway. I remember it was a funny kind of pain. I thought no more about it until a week later when I rolled over in bed my forward brushed against the pillow and I felt a pain like an electric shock. About two weeks later I had to take my daughter-in law to the hospital. While there, I saw a doctor and he diagnosed it as trigeminal Neuralgia, and put me on Tegretol 200 at night and again in the morning. I was on inderal in the morning as well. This went on for a few year then I was taking only the Tegretol night & Morning. It was not too bad I could put up with it. In 1996, it started to get very bad. ‘Twas all over the left side of my face so bad that I found it painful to talk and I could not eat and lost a lot of weight. I double up my intake of Tegretol but this did not ease the pain. A year later I was having blood test for Cholesterol one test showed that my White Cells count was down. I went to a Chemist and being no medical drugs to boost White Cells the Chemist rang a Naturopath who suggested Shark Liver Oil 250mg, two tablet twice a day. I found this eased the neuralgia a bit. Eventually I was sent to Nerve Specialist who first put me on dilantin this made no different, next he put me on Amitriptyline 50mg.because the Tegretol was causing the loss of white cells. After speaking to several herbalist I put myself onto St. John’s Wort (Hypericum perforatum equiv 2g dried herb) So now I am taking Shark Liver Oil 250gm; St John’s Wort 2g; Shark Cartilage 1g.as well as the Endep 50. I have had relief from this mixture of herbs. This seems to work for me Name: Larisa All please my story: http://www.etel.dn.ua/~sedlak/myhistory.html! Thank you very much! Name: Debbie My TN started 13 yrs. ago right before my second son was born, stabbing pains on the left side of my face then it went away for about 6 months, and when it came back I really did not think I was going to make it, I could not eat, talk, thank God for my hubby cause he took care of the boys people just don't get the pain we are in they just think it is a headache or something like that I really considered ending my life, I just could not leave my family, A dr. finally told me I had TN and put me on Tegretol about 3 months later It took the edge off so I could function but the TN kept coming and going but about 6 yrs. it got real bad again and I had MVD, after the MVD I thought my life wasgoing to be great the MVD worked but it didnt last,but the pain was'nt as bad as before the MVD until about 1 month ago it just started all up again tegretol and baclofen are helping some but one thing that helps relieve it for me are really hot baths, I know thaat sounds strange but after a hot bath I have relief for a couple hours and that is alot from that terrible pain the one thing I forgot to mention is when they went to do the MVD, when they got in there they found out it wasnt a compression in ther like they thought I had a vein over some vessels that they removed, dont know why that the pain but I was just glad to have releif even for a little while anyway thats my story I hope to get better and I wish all of you Good Luck and health E mail if you wish Name: Denise I woke up one morning and had this pain in my face by my nose that shot to my head, I went to the doctors he checked my sinuses said he didn't think this was likely ,but to try antibiotics in case. Well I am still having the pain but now it is in my cheek to. I get this from eating, touching my face, yelling anything with the face. This hurts and I am a worry wort on top. The doctor said the next step is a cat scan and told me some about tn. Does my pain sound familiar? Any help would be appreciated. Name: deedee my face hurts so much that i cant lay down to sleep. my husband can no longer even place a kiss on my cheek. i have tried darvocet, motrin and cyclobensperine. nothing helps! i cant wash my face because i can not stand to touch it. even my hair just barely touching it makes me want to scream. please help Name: Ka Chung I am a 42 years old Chinese male, currently living in Hong Kong. I've been suffering from TN for 20 years. My first encounter with this terrible disease was in 1979 when I suddenly felt a sharp,stabbing twinge on my left jaw deep under the cheek bone. The twinge kept come & go, sometimes stopped for several months, then returned for months. I consulted my dentist and he suggested me to use a sensitive toothpaste. To no avail I later had all four of my wisdom teeth surgically removed in 85 since they all digged deep into the jaw area. I had thought finally I moved out of this shit until it striked back in about 6 month's time. My family doctor just referred me back to the dentist. It was not until 1992 that I was finally rightly diagnosed to be with TN by a neurologist. It is the third branch of the trigeminal nerve. I remembered that whole day I was under severe continual stabbing pain, triggered by eating, drinking and tooth-brushing; it was so severe that I dear not move my lips at all. I was prescribed with my first dose of Tegretol, and the drug had saved me for 1 whole year. Two MRIs were performed in 92 & 96 that revealed nothing wrong. I had altogether consulted 3 private neurologists and 1 neuro-surgeon from the Nethersole Eastern Hospital of Hong Kong, and they were all of the opinion that my case was not severe enough , that it didn't worth the risk of aggressive surgical procedures. But by then another major problem was looming, as Tegretol began to lose power. The problem got even worse when the drug brought me out in red rash of my skin. Later I was prescribed with Amitriptyline, Dilantin, and Lioresol instead, they were less powerful, but also less toxic. To cope with the pain that I probably would have to live with for the rest of my life, I decided that I must have as much knowledge as is possible before I could have faith to tackle it. "Know thyself and thy enemy, thou win a hundred out of a hundred wars" a Chinese Sage once said. Thus beginning from 97 I enrolled in the part time degree course to study traditional Chinese medicine (TCM) in The University of Hong Kong up till now (As for my background I'm a business man by profession, I earned my bachelor degree in business management from The Chinese University of Hong kong in 83). 1998 was my watershed in treating TN, from then on till now (02) I have used TCM ONLY. I understand that this is rather odd, especially to my fellow western TN suffers,as I look through this web site that I seem the only one that use TCM only. It's very difficult to understand TCM thoroughly without a sound Chinese civilisation background, needless to say, trust it. The key point is that one must rightly diagnose the TCM pathological mechanisms for himself. These mechanisms can vary from patient to patient, and from stage to stage on the same patient. The job is done by the traditional four methods of diagnosis: 1)inspection, 2)olfaction & auscultation, 3)history finding, 4)pulse feeling & palpation. In other words this is a highly subjective procedure as compared with modern objective hi-tech methods. I myself had to follow 6 TCM doctors (mostly my university lecturers), each for several months, carefully evaluating the results after taking the medicines, before I could conclude my own mechanisms in priority order. This is the basic reason why I have to learn it myself, because both TCM doctor and patient can be very subjective. I believe that the basic pathological mechanisms for TN are highly similiar to that of epilepsy, they are problems on the same set of cranial nerves(5th & 8th).That's why in modern medicine both are treated with anticonvulsants like trgretol and Dilanin. Seizures occur when the electrical activity in the brain that controls the movement of the limbs becomes paroxysmal and chaotic.The most common form of seizures is epilepsy. Both epilepsy and TN involve convulsions, muscle twitching, last only a few minutes, prolonged attacks interspersed with remissions. Anticonvulsants are used to block the Na+ passage, reduce Na+ inflow of the affected brain cells, that's why they can stop the pains almost instantly in TN. From the TCM point of view, they also share the same set of pathological mechanisms. And that the recipes used to treat both diseases are basically the same. The mechanisms include: 1) flaring up of the asthenic fire caused by dificiency of YIN vital essence of kidney & liver(in TCM kidney & liver represent a series of function rather than an anatomical organ as in modern medicine; kidney installs vital essence and in charge of growth, reproduction & urinary functions; while liver stores blood and smooths the flow of vital energy.)------this is marked by dry & sore throat, dizziness, restlessness, red eyes, oral ulcers, dryness of the eyes & mouth, insomnia, sore waist & knee etc. 2) Mental disturbance due to phlegm & fire(in TCM phlegm is divided into visible and invisible; visible phlegm is those we spit,while invisible phlegm is thought to be a form of pathological bad energy that has similar therapeutic properties as visible phlegm. We now refer mostly to invisible phlegm.Fire refers to the manifestation of intense heat.)-----this is marked by raving madness, red tongue tip, yellow dense and greasy tongue coat, slippery rapid pulse,insomnia etc. 3) Deficiency both in heart & spleen (again in TCM heart & spleen are not anatomical organs. Heart controls blood circulation and mental activities. Spleen shares with stomach the function of digesting food, transport nutrients and water,reinforce vital energy, keep blood flowing within blood vessels)-----this is marked by palpitation, forgetfulness, insomnia, loss of appetite, abdominal distention, loose bowel, lassitude, sallow face, fine pulse, anorexia etc. 4) The heart channels being obstructed by phlegm as a pathogenic factor ----- marked by phlegmatic sound in the throat, coma etc. 5) Others include: a)head injuries resulting in stagnated blood obstructing the blood vessels; b)the 7 emotional factors being in excess (joy, anger, melancholy, anxiety, sorrow, fear, fright especially) and c) the last are congenital factors. As for my case, TCM diagnosis suggest that: 1) Years of rich, greasy food and sweet cold drinks, plus melancholy & anxiety, have weakened the functions of the spleen. Dificiency of the vital energy of the spleen lead to stagnancy of dampness, which in turn lead to phlegm. This is characterised by dense slippery coat of tongue. This mechanism works very well as every time the dense tongue coat subsides, the twinges gone. To do this I need to eliminate dampness and resolve phlegm. Recipe most commonly used is the Wandan Decotion ( Pericarpium citri reticulatae, Rhizoma pinelliae praeparata, poria, Radix glycyrrhizae praeparata, Bambusa tuldoides, Citrus aurantium). 2) Years of emotional distress have transformed the 7 emotions into fire; which mean that the uncontrolled overflow of emotions have disturbed the natural flow of QI(vital energy) and injured the genuine YIN vital essence of kidney & liver, which in turn cause the flaring up of asthenic fire and endogenous wind. To deal with this, I need to nourish YIN vital essence of kidney & liver. Usually I use tonics like pills of 8 drugs (Radix rehmannia praeparata, Fructus corni, Rhizoma Dioscoreae, Rhizoma alismatis, Poria, Cortex moutan radicis, Anemarrhena asphodeloides, Phellodendron amurense.) But here come one complication, because most tonics are difficult to digest and can increase the work load of the spleen, which in turn will lead to accumulation of dampness & phlegm. I must carefully sort out their priority each time by examinating tongue & pulse. Also acupuncture points I find helpful are:Dicang(st.4), Jiache(st.6), Xiaguan(st.7), Fenglong(st.40), Yifeng(s.j.17), Taichong(liv.3), Quanliao(s118), Hegu(H.1.4), Sibai(st.2). Stimulation sources that must avoid include : too hot spicy deep fried food, too cold & sweet drinks, strong alcohol and pornography. As for the healing results, my present position is that from 98 onward, each year I can enjoy about 8-9 months pain free, with 4-3 months minor to medium pains,basically not affect eating or tooth brushing, albeit at a slower rate. If compared to my Tegretol days (92-98), it has already been from hell to heaven. On one hand, I would like to combine TCM view point with that of modern medicine.The short circuit theory states that damages of myelin sheath that insulates the nerve fibers lead to short circuit of the nerve electrical impulse, resulting in increased electrical traffic in the nerve. This may further aggravated by prolonged depressions of the 7 emotions, invisible phlegm and stagnated blood. That's why the pain is always sharp sudden in nature.The STOMACH MERIDIANS must be the chief passage of phlegm as they stretch from stomach to head, lying along the cheek,and that phlegm is generated and stored in stomach & spleen. That's why acupuncture points like Dicang, Jiache, Xiaguan, Fenglong, Sibai, all lie along the stomach meridians. Citing myself as an example, one can see that it's not so easy to establish the causes for TN. Differtent mechanisms from different patient's everyday life creep in unnoticeably, then intermingle together, till finally they attack the electrical activities of the brain. Anticonvulsants can calm down these activities for a period, but if the mechanisms that aggravate them are not properly dealt with, the pains strike back pretty soon. Also it's evidence that the pains usually come back after a common cold. This may be due to facial blood vessels spasm. But I would prefer the TCM view that cold has internalised and turned into fire(as evidenced by sore throat). Together with the fact that phlegm is usually associated with common cold,which can easily turn into fire too, thus render enough of fire power to erupt. On the other hand , if I were to compare the two systems, I think that modern medicines have the benefit of stopping twinges instantly, but with potentially fatal toxic side effects. Surgical therapies can have the chance of removing the pains permantly, while they run the risks of striking back at a vengeance level. As for TCM, the advantages are: 1)the healing effects usually more durable. Its distinct characteristic is that it can have an accumulative healing effects. One needs to accumulate it for a longer period before it can produce longer effects, but provided one accumulates it in the right direction, of course. 2)the toxic side effects are much lower, this is the most important reason I opt for it as I still have a long way ahead, 3) comparativly cheap (in China and Hong Kong). The limitations of TCM are: 1)long time to see results, subjective diagnosis, easily lose patience and confidence. 2)it's very difficult to use it in acute eruption period because basically the herbs all need boiled into soup form. In acute period, taking 1 bowl of soup would be ten times more painful than taking 1 pill, and that it's instant pain stopping ability is low. That's why it can only be used in mild eruption period. 3)so far as I can see it can only keep TN at tolerable level, the hope of eliminating it completely remains very dim (at least for me). I understand that there are people out there with situations much worse than I'm , as to them I can only offer my most heart felt sympathy. It's my sincere hope that eastern & western medicine can work together for more effective alleviation of our pains.For those of us with religious backgrounds (whichever tradition), may we pray together for better healing strength & hope. Lastly, I do believe that a little bit meditation can help. Since Buddhism emphasizes the right 'mind', and that TN is a problem of the central nervous system which in some sense is analogous to 'mind', I would like to recommend a book called"The Healing Power of Mind" by Tulku Thondup.
"Mind at peace and your realm is at peace". the Buddha sutra say. |
|||||||||||||||||||||||||||||||||||
| Please
e-mail comments / questions for this section of FNR to editors@facial-neuralgia.org. |
|||||||||||||||||||||||||||||||||||||
