Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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  • Anybody know or have a theory on how they got TN? In my case it seems to have started after extensive dental surgery. My symptoms that I am now stuck with are horrible burning/stinging pain in the roots of my teeth, cheek pain, neck pain and headaches. Going to the dentist flares it up even during a routine cleaning, dental shots definitely make matters worse once it wears off and other times...
  • I diagnosed myself with TGN. MRI shows nothing, but I was told it didn't view base of my neck. My painmis gnawing, not sharp. I was given Tegretol, with much relief. What do you all think about this? Thank you in advance.
  • My neuro thinks I have a mild case of TN. I've had those sharp shooting pains thru my temples, under eyes, cheeks etc for years. Seems to come with my MS. It's not the "I wish I could die" type of pains and they are short-lived and sporadic. But those pains in the temple and head are scary. I recently went thru a round of terrible teeth and mouth pain. I figured it was my periodontal...
  • Hi all,I am new here! After months of what felt like tootchache (and numerous visits to the dentist who could not find any problems) my Dr has diagnosed TN. This was due to my symptoms:Pain in jaw, cheek area, eye/head.Shooting/stabbings pains, unbearableUnable to eat/brush teeth/lie down without painConstant dull ache in right side of face that no pain killer helpsDr prescribed carbarmazepine...
  • was diagnosed back in january and have been on carbamazepine which has been helping quite a bit to alleviate the pain - but damned if i don't just pass out and sleep after work right on through to the next day. i'm EXHAUSTED all the neuro decided to to lower my dosage and but me on the xr formula in hopes the side effects would go away. she said we'd try this for a couple months, then...
  • seafarire

    Working with TN

    My boyfriend has been struggling with TN since last October. He's having a hard time at work. I'm unsure of what to do. The doctors are telling us there's nothing they can do. I also live in a very small town, good doctors and good jobs are hard to come by. My questions areWhat kind of job do you find suitable while you're dealing with TN?Can you work at all?Have you thought about/ spoken to...
  • BostonTN

    Seasonal Rant

    OK... here is the change of seasons again. I'm in pain, my side effects are pumped up, migraines and lack of concentration. Why does this happen every time the seasons change? Does anyone else go through this? I may have to find an area that has the same weather year round or close to the same. Also on another topic does anyone have a problem with talking? I mean the vibrations from talking...
  • BostonTN

    Seasons Change

    I've had the hardest times through the change of seasons. When the weather turns from hot to cold or cold to hot. I was brought to my knees while shopping in the supermarket. This is so frightening when in public. I find myself getting worse because I panic and my stress level goes up. How do you get yourself through this situation other than dropping everything and heading home?
  • pamela23

    Vitamin Therapy

    I recently read that a deficiency of Vitamin B12, could have a profound affect on those that suffer from Trigeminal Neuralgia. Has anyone tried Vitamin Therapy with success?
  • I'm freaking out. I was just diagnosed over the weekend. Give Tegatrol. It's not working at all. And now ...I'm having a panic attack and can't stop crying. My pain is 3 times worse then it was. It's radiated back and bottom of the right side of my head now not just the top and face part. I feel weak... dizzy... Somethings going on ... I'm at the ER. But I can't stop crying because I can't think...
  • Has anyone had any trouble after MVD surgery and flying. We are planning a vacation and I have had some issues with vertigo since I had surgery. I had surgery back in 2010 and two years ago developed vertigo, it is associated with the Eustachian tube, I found this out after having a massage. Has anyone had a problem with vertigo flying,?
  • hannhasau

    Ultrasound treatment

    Hi!I'm writhing here cause my mom was diagnosed with Trigeminal Neuralgia last year. First, she was treated with pills, but after that seemed not to have much effect.Now she is in the midst of naturopathic treatment and acupuncture, and there is a slight improvement. My question to you is if anybody heard about some ultrasound treatment called Painshield??I heard some really good reviews and...
  • Does anyone else get woken up bu pain in the middle of the night? I take tegretol (ER and chewables) and a baclofen at bedtime...but for the past several weeks Ive been woken up with unbearable pain a couple of times a night, I crush up a tegretol or two and put it under my tongue and wait for relief. Eventually I get back to sleep only to be awoken 2 hours later.Strangely during the day I'm...
  • i'm taking trileptal, Lamictal and neurontin. I have ATN. It isn't working and my neuro wants to put me on lyrica. I'm hesitant because I've read more bad than good. I've asked about trying me on some of the other TN meds, but he seems to have a one track mind which consists of these 4 meds. Has anyone had a good experience with lyrica? I've read that the side effects are worse than the...
  • I have very sensitive teeth since my MVD, has anyone else had this problem? How long did it last?