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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  • I finally saw the neurologist....3 of them actually. They put me through 3 MRIs, and I had to see an oral surgeon to make sure it wasn't my teeth (duh. smh). I was put on tegretol, 200mg but I upped it another 100 because it wasn't doing jack. If I miss a dose forget it. This suuuucks! Windy days, cold days, roller coasters, hanging my head off the bed/sofa, bending down from the waist,...
  • I have just recently been diagnosed with trigeminal neuralgia. At first I was put on 200 milligrams of Tegretol twice a day. It worked like a charm for two days then the pain came back with a vengeance. After my MRI I was put on 300 milligrams of Tegretol but that didn't work so I started taking 400 milligrams which works fairly well as long as I don't miss a dose. The thing is, it makes me...
  • SilentWhispr

    I thought I'd had it all. Trigeminal Neuralgia

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    Being a kidney stone, bipolar, agoraphobic, depressed, OCD, overweight, Lesbian; I thought I had experienced a lot until I was diagnosed with TN. Now, I'm in the middle of my pain coming back after it being gone for about 6 months. Started with my nose and now is every breath i take up into my head. It has been the whole side of my head...teeth, ear, the works..but for now..just the nose and...
  • BostonTN

    Eye Pain and Medication

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    Hi Everyone,I have a question regarding eye pain with shocks from TN.  Has anyone else had pain in their eye from the side of your face? I went to an Opthamologist without any findings.  They suggested that I see an Neurological Opthamologist.  I'll make that appointment soon.  I also wanted to know when your medications that keep your condition stable began to fail.   My pain is increasing...
  • evadecember

    Tegratol/carbamazepine

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    I'm taking carbamazepine which I'm told is tegratol, is this medication known for causing weight gain?
  • mar5116

    Homeopathic Remedy

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    Just received my homeopathic remedies in the mail today.  Have been on carbamzapine, but want to get off due to its side effects.  Have also had gamma knife surgery and it was very effective.  I was pain free for about 3 years.  Pain has since returned.  Want to avoid MVD, so looking for alternatives.  Have also been reading lately about the harmful effects of gluten and sugar on nerve...
  • rat

    Relatively new to TN and need advice on meds

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    I am 65 years old and was diagnosed with TN in August of 2016.  Started with a bad sinus infection then a week later horrific pain started shooting through the left side of my face at least 10 to 12 times a day and night.  These pains came on out of the blue even when asleep.  Since you are in this support group I know you know the drill so I won't dwell on the weeks of unbearable pain.  I am...
  • evadecember

    Acupuncture

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    I don't even know why I'm typing a post, I never get any replys!! I'm going to post anyway.  So my first appointment for acupuncture is Tuesday 9/6/16.  I'm a little scared of getting poked with the needles.  Don't know why, I guess it's cause my face will be getting poked with needles!!  I really wish I can ask someone with TN if they've ever had their TN treated with acupuncture, or if...
  • Kathy57

    double TN and weight gain

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    Anyone else have it on both sides?  Also, I'll be going back to the dr soon.  I would like to have my med upped but an scared of more weight gain.Kathy57
  • evadecember

    Acupuncture

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    Hello everyone, just wanted to share with everybody my experience with acupuncture.  I was really hoping this would help me.  So my first appointment I had to fill out paperwork just like when you go to a new doctor and they want to know your health history.  I explained to the acupuncturist why I was there and I even brought him articles on TN and a diagram of the nerve branches showing which...
  • NeuroNerd

    New to the Forum

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    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...
  • BlackgirlTN

    Is there any other options

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    hello my name is Nekita and I am a single mother of 3 who also cares for her mother. I was diagnosed with TN 2 years ago and since then I have had MRI which showed nothing and have been on several different drugs like Carbamanzapiene and Baclofen to name a couple. Right now I am on Noritriptilyne and it doesn't seem to be doing much. With winter approaching I am terrified because it seems like...
  • evadecember

    Anybody out there

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    What kind of support is this?  Nobody is online, no one ever replies to posts.  This isn't a support group at all!!!!
  • HFS20

    Recurring HFS after MVD a year ago

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    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.
  • kathryn56

    Kathryn56

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    Is there anyone out there like me where my MRI shows significant trigemenial nueralgia vein or artery compression, but symptoms sound like atypical. I'm down because neurosurgeons label me type 2 with the fact of compression on my nerve, so I have had 3 neurosurgeons 2 against surgery one the famous dr. Brown who said yes to surgery. I'm confused I can't seem to move forward trying more meds. If...