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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  • Misery17

    Numbness and tingling in my face for over 2 months

    I was diagnosed in 2015 with TN2. Had all the MRI's, MRA's.  In June 2016 I underwent Gamma Knife Radiosurgery.  The pain resolved for a short time.  Ended up going to pain management and acupuncture. Very costly. Now I have constant numbness and tingling. Called the neurosurgeons office.  Inquired if the numbness could be from the Gamma. They stated not that many months after. You need to...
  • lily1216

    Looking for some advice, scared and confused.

    I am a 25 year old who was diagnosed with trigeminal neuralgia a week and a half ago since then my body has given out entirely I can barely walk and the pain in my face comes and goes but is absolutely excruciating. I was diagnosed with permanent vertigo a year and a half ago and now it seems the two are working together and it's absolutely miserable. I have gotten all tests done just waiting for...
  • 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...
  •  Hello, My husband may or may not have tn. 3 doctors have no clue.  Originally thought it was an infected salavatory gland.  MRI, xrays and ultrasound show nothing.  The pain is getting worse a friend told me about TN and I've been researching it.  Ill be making an appt with the mayo clinic tomorrow hoping for some type of answer.  Anyways thru my research thus dude was saying TN could be...
  • ceesue

    New to this

    I was just diagnosed with TN recently.  Actually I self diagnosed after getting shock-like pain in right side of face. My primary confirmed it.  I haven't seen a neurologist yet.  She prescribed 200 mg. carbamazapine twice daily.  My symptoms were not bad yet but they were getting consistent. I had many "jabs" in side of mouth when I talked or ate.  I lost weight as I only ate when I had to....
  • dreamer22


    I was diagnosed with this at the age of 21(it's been going for 3 years). It started with a slight burning sensation on my right side of the face. Then it worked it's way up to my scalp. Now it's working it's way to my left side of the face. I've tried the meds prescribed by my doctor's only to have complications with the side effects. It's a struggle everyday. I can't have a conversation with...
  • kdickerson29

    MVD Surgery

    I am scheduled for MVD surgery in a week but I have been reading post-op comments across several websites about post-recovery issues. Can anyone share their experiences? I would be so grateful. I am not feeling as confident as I was previously. It seems there are a number of lingering issues and hence, trade-offs. The upshot is that one really compromises their quality of life. What can I expect?...
  • 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...
  • deleted_user

    omura protocol

    Has anyone used the omural protocol to relieve their pain? if so what was is like? did it help? thanks, niku
  • 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...
  • jansha

    Trigeminal and odd smells

    I was glad to see that others have talked about their issues with smells as triggers etc. I had an issue with switching from Tegretol (which I hate) to Trileptal. I took it for a few days and immediately smelled burnt metallic smell that was awful. I ended up flipping back to Tegretol because I really felt that the switch was the issue. Now I still have some issues with certain smells but less...
  • 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)...