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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  • Hello, my name is Eva and I was diagnosed a year ago. I was prescribed tegratol and it worked amazingly. I was pain free for 6 glorious months. Pain came back, I'm back on tegratol. I'm taking 3 pills in the morning, 3 in the afternoon, and 4 at night. I've been on tegratol for a while, pain doesn't want to completly go away. I wouldn't say I'm still having that horrible pain, it's a...
  • 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.
  • NeuroNerd

    New to the Forum

    0
    Hello, all. I've been dealing with TN for the last 7 years or so. My mother also has it (for almost 40 years), but she and I were only diagnosed about 3 years ago. Up until then, neither of us had heard of TN and just called it "facial pain." Growing up, a lot of people thought my moother was just over-dramatic or sensitive. Now that we're both diagnosed, we've tried looking for reasons and...
  • Hi ...14 months after my MVD surgery, my HFS returned. It took me about a month to fully recover. I lost my hearing due to the surgery also. Has anyone had a 2nd mvd done before? if so, how was the outcome and where did you go and the surgeon? Thanks.
  • madeleine5

    Advice, please

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    Please bear with me, but I really would like answers to my insecurities regarding TN. Brief background: I was diagnosed with TN a few months ago, but I believe I had my first attack nearly 30 years ago, starting in my left hand jaw. I often had what I thought were migraines lasting for a few days with pain on one side as if someone had slapped me. I joked that if only I could be slapped on the...
  • 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...
  • If you had an MRI and it found nothing but you have TN with migraines, seizures, burning facial-eye-jaw pain. There is a special MRI that I had done after my first MRI showed no problem. I went to John's Hopkins Neurological Center in Baltimore MD and Dr. Lim did a special MRI and found two blood vessels that collapsed on my Trigeminal Nerve. I had a microvascular decompression surgery procedure...
  • TonyB

    Recovering from MVD

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    Hello folks,I am writing this because it has been a difficult recovery after Micro-vascular Decompression (MVD) surgery. My name is Anthony and I developed with Trigeminal Neuralgia (TN) symptoms about 2 and half years ago. My wife is convinced it may have been related to a minor traffic accident. However, my neurosurgeon stated that sometimes it could be birth defect that gets worse with age....
  • 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...
  • 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 time.my 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

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    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

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    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

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    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?