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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  • Nobita

    Solution to my TN

    I experienced TN last feb 2016. I took medications. Then it came back on April 2016, and June 2016. It was very painful. If I will rate it from 1 to 10, it was 12. Usually it took 15 to 20 days to be cured by medication. In my experienced, my wife massaged me at the back and in my shoulder. And the pain was instantly gone. But the pain came back after 10 to 15 minutes. So every time it attacks...
  • 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
  • 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...
  • NeuroNerd

    New to the Forum

    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...
  • coreysarah


    hi! I'm new to TN and have been prescribed Aptiom, I haven't seen this mentioned often in threads/discussions...has there been much success for anyone on this medicine? I was able to get significant relief the first day for about 12 hours but then the pain progressively returned. When I took my dose on day two I was disappointed as I didn't get near the relief as I did on day one.
  • 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...
  • LilMsSunshine


    I just joined this site. A few months ago I was hit in the face pretty bad. A month after I began to have terrible shooting pains in my face. Went to the ER the doctor said it was nerve pain and prescribed neurontin. It was working but not so much now. I only found out about TN by googling my symptoms, and I have all of them (1 & 2), so I'm certain it's what it is. I can't see a neurologist until...
  • 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?...
  • evadecember

    Anybody out there

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


    So my husband convinced me to try acupuncture?  He seems to think this will help so much that I won't have to take my meds anymore!  I'm not as hopeful as my husband but I guess it can't hurt to try it.  My neurologist gave me the okay so I guess I'll try it.  Has anyone ever tried acupuncture for TN?
  • lennonforever

    TGN - MRI is negative

    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.
  • 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

    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...
  • TonyB

    Recovering from MVD

    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...