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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  • Hawaiian


    The unfortunate position l have is not being able to drive anymore. I miss driving my Ford pick up truck and taking photos with my Olympus camera. So, far not driving for 10 years is a lesson to adapt to. God helps me survive. I am up for an MRI soon which l put off for 2 years because I wanted to see if I could do with out. Yet, ll will try again and see the outcome. I know God will be with me...
  • ingelo

    Repeated attacks of TN after lengthy remission

    Does anyone else experience long periods without attacks and then they suddenly re-appear? I wish I had some idea as to the triggers if there are any but my episodes have always started in the early months of the year, mostly around March. I now go on Carbamazepine as soon as I get symptoms which are shocks in the mouth/tongue when eating, brushing teeth, drying face and soreness around the nose...
  • Hawaiian


    My days are average for a TN person and my medication are adjustable for many years of trying others. It's an interesting experience to read everyone's words. Life gets better to read about all of you. Mahalo nui loa thank you very much. Aloha pumehana-warmest blessings. 
  • yasmin17

    Do I have TN?

    Hi I'm new to this group but was looking for some advice about this condition. A few months ago I started getting really bad symptoms (numbness up and down body, dizziness, sickness fatigue and many more) I was terrified thinking I had MS the doctors put me through loads of tests which all came back normal and even ordered an MRI brain scan which the neuro claimed came back as  "pristinely...
  • JerseyJoe

    new to group

    Hi--i want to join a support group to try and understand this devastating pain in my faceright now, i am pain free, i am curious to hear of other's experiences, including shifting and changes in intensity of attackstaking carbamazapine er 300 twice a day with lamictal 100 (split dose)did not like the effects of neurontin, which did not seem to do anythingtook topiramate for a long time (5 years)...
  • evadecember


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


    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...
  • Sadmommaof2

    New to this

    I just found this site and I was diagnosed with TN a few months ago. When I first got it I thought I had a cavity. Turned out no, but when I landed in ER I knew it was something more and all these damn doctors kept giving me medication not even for what I had. I went to a TMJ specialist that wanted $7k for a plate so got second opinion. Oral surgeon said it was TN and gave me medicine that didn't...
  • 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

    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

    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...
  • mar5116

    Homeopathic Remedy

    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

    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...
  • Kathy57

    double TN and weight gain

    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