Hi, New to this forum and Atypical TN. My story is unusual and although 3 neurologists say I have ATN we are still doing tests. So far the last 4 months have been a nightmare and I am really scared that there will be no quick fix and I may never lead a normal life again.
I am a 55 year old male. On October the 6th I was eating popcorn and got a shell wedged way down on the side of my tongue where it meets the throat. I don't remember it well but do remember sticking my finger down there and trying without sucess to get it out. It was evening and again I was not paying attention if I finally got it out that night or the next day but when I did I felt had searing pain up the side of my face. Didn't last long but it was very intense! Again my memory is not great but within a week I remember complaining of ear pain and tongue numbness. Went to the ENT doctor and she scoped me and saw nothing. The pain continue to worsen in late October through December. Pain can be deep in one ear or another or both. It also runs down just behind and below the ears. Tongue is off and on again numb. Pain feels like scissors is cutting through flesh and sometimes breaks out into stabbing brief extreme pain, but most of the time is more moderate. I have had MRI's of brain/ neck/Tspine and CatScan's too. I have had blood work and a upper Endoscopy Nothing! I was on 1200mg been put on Gabapentin and currently trying Carbamazepin, 300mg per day.(Day 5) Next week they are going to do a detailed Trimgeminal MRI. Narocotics don't seem to help. Nothing so far does. This pain is life changing. I don't socialize, don't go out, just try to get through the day. Some days its tolerable, today it is not. Again, no triggers, no face pain, just deep in ears and tongue. I do notice that during the night, if I get up I am pain free. Early AM is usually good too, just gets worse during day. As anyone had my symptoms? Doesn't seem like what I read from people here.
I live in NH. I am starting to see a Neurologist at Mass General. If anyone if in the Massachusetts area and can suggest a great doctor, I would appreciate it!
I have pain in my ears and the sides of my tongue towards the back feels like someone is using it as a twisty tie. I also have numbness on the right side of my tongue.( But I have a multitude of other symptoms that I started out with originally.) These new symptoms were brought on by a shot I got at the dentist office to have work done on a tooth on the bottom left side of my mouth. I also have burning on my chin too, and burning on the roof of my mouth. Plus I am bilateral now because of that shot. So from now on, it's going under for dental work on the bottom teeth for me!! Min
Hi W A lot of us find we were eating something when the TN first struck. I was eating something chilled from the fridge and the pain shot up through my tooth. That tooth is now a problem for me. (nothing wrong with the tooth, just the nerve) I remember another male, saying he was eating a crisp when it got stuck in his tooth and bam his started that way. I think doctors are of the opinion that our nerve was ready to 'go' anyway for what ever reason, and eating was the trigger.
On the home page on the left there is a box called Dr’s We love, the ear pain group can also be found on the home page much further down on the right. Click, join and away you go. Subgroups can also be found at the top of the home page on the black header under GROUPS.
Hi WeatherEye,
I wish you the best in finding a good doctor. Being here for as long as I have I don’t find your story unusual. Unfortunately it’s all too common. The best advice I can offer is for you to do so much research that you know as much if not more than any doctor you run across. Many of us here have had to do that out of necessity.
Be aware that a clear MRI doesn’t mean you don’t have ATN. Also, if any neurologist or neurosurgeon says they can “cure” you with MVD surgery, RUN, do not walk to the nearest exit.
Thanks Gloria. Yesterdaythe pain was intolerable and just couldn't believe how severe it was lasting hour after hour. Today it is better but still there. Never a regular day. Unlike something like a broken foot where you know the pain will get better the scary fact for me is that it may never leave. Sleep is my escape. Family says "walk it off" and keep busy but when it gets going I can't barely keep a conversation going. Forget errands and daily living. Pain meds don't help, nothing yet not Gabepentin or Carbamazepine. I am a self employeed photographer and have stopped working. Doing a special MRI at Mass General next week and they will "thinly" slice through the Trigeminal nerve. Seems from reading this board ATN does not respond to treatments as well as regular TN. Just can't believe this has happened. Okay, feel better venting!
Pray that in time you will learn live with your new challenge of TN2 (atypical). The more you review LWTN you will find comfort, support and affirmation that we get it!
I too experience the no pain while asleep and first thing in morning. Bizarre to regular folk but we feel you!
Remain linked in to this site and make sure your medical team is on board with your diagnosis and take your ques from your new friends here about kooks, quacks and heartless professionals.
My TN pain is very intense when it hits and it pulsates with painful electrical jolts that knock me to my knees with my eyes copiously watering. I liken it to being being Taser'ed in the face, though I've never had that "crime-scene" pleasure. Jolts are on my left side only at lower gum-line, behind that eye and behind the bridge of my nose.
And so, that said; our pain is different. Where we are similar is not having pain while in the horizontal sleep mode. There's only one exception to that. My very first attack, brought me out of a sound sleep, and to a rigid "At-TEN-HUT!!~" at 3am on 22Dec 2008. After many tests and begging that all my teeth be pulled, my dentist and his collaborators told me in med-April 2009 that the culprit was Trigeminal Neuralgia (TN) aka Tic Douloureux. Blessings, Rick