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Trigeminal neuralgia

Do you experience trigeminal neuralgia? If so, what has your experience been like? Have you found anything that seems to help with it?

  1. I have battling trigeminal neuralgia for several years. It comes and goes on a whim. The pain is excruciating. It was a long journey to diagnose, it has been the WORST symptom of MS, and I have had many. It makes me sad.

    1. , I am sorry you deal with trigeminal neuralgia. I consider myself a pretty tough gal, but dental pain is my kryptonite. I just can't handle it. Does anything help when you experience this pain? Has your dentist been able to offer any possible solutions?

      Best, Erin, Team Member.

  2. Unbareable pain that Dentist and specialist agreed wasn't dental.
    Specialist's mother had similar pain, and
    had teeth removed.
    She asked me to see a Neurologist, and mentioned TN.
    I've since had Gamma Knife, and 3 Rhizotomies. Pain gone for now.

    1. Thank you so much for sharing! Glad to hear you are pain free currently! 🧡 Sam, Team Member

  3. It's one of the Worst Pains I've Ever felt. Even blinking my eyes hurt, and a slight breeze blowing across my head felt Absolutely Agonizing.

    1. , ouch! I'm sorry. Trigeminal Neuralgia pain is on a whole other level, isn't it?

      Gentle Hugs, Erin, Team Member.

  4. Four years ago I started experiencing, what I called “zingers” on the right side of my face. It was focused particularly on my right upper lip, nostril and one tooth. I had it removed.
    The pain persisted. I came across TN and had rhizotomy surgery.

    1. did That help u because with mine it comes and goes but when it comes it's the most excruciating pain I ever felt

    2. In the beginning, I experienced what I called “zingers”; which would happen randomly, every couple of weeks.
      It quickly progressed to severe painful electric shocks that happened every day and sometimes in the middle of the night, painfully jolting me awake.
      I started to log them on a calendar with a lightening bolt for each one.
      Before I was prescribed Oxcarbazapine, I was having up to 15 painful shocks a day ! The neurologist at the Cleveland Clinic (where I had my specialized MRI done) had steadily increased my dose to 1,050 mg. a day to get relief. The side effects were brutal for me.
      I found a wonderful neurosurgeon and together we decided the Sterile Glycolic Rhizotomy was the best for me.
      I had my surgery on 5/4/2023 and have not had a painful shock since.
      Unfortunately this procedure is not permanent like the MVD claims to be (I wasn’t a candidate for MVD surgery)
      The Rhizotomy surgery is effective for an average of three years, because nerves grow back and repair themselves.
      I will need to have it again or chose a different procedure, like the gamma knife, radiation etc…. There are a few different procedures to choose from.
      How long have you had pain from TN ?
      I was diagnosed with TNV2 (the maxillary branch)
      Where is your pain located ?
      I’m so sorry that you too suffer with this insidious condition.
      There is hope with different medications and procedures; you just need to find which one works best for you ❤️

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