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Trigeminal Neuralgia

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    Trigeminal Neuralgia

    Hi, does anyone here have trigeminal neuralgia ? I have been diagnosed and have had a few episodes. The last one was so severe I ended up in the hospital with the whole left side of my head feeling like I had hot pokers jabbing it along with all my nerves feeling like they were electrically charged and zapping my face constantly. I literally wanted to blow my head off ! I was given dilantin, percaset ,and narco. I'm currently taking 800 neurontin 4xa day, oxcarbazepine 350 2xa day and lamictal 25 1x a day. It's currently under control.

    #2
    Yes, as part of my MS. I have stabbing pains and spasms on the left side of my face, neck, and arm with numbness in my jaw. I take a lot of gabapentin with 300mg of trileptal twice a day. It's a bummer.

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      #3
      Hi medic228, sorry you are suffering from trigeminal neuralgia. I have had episodes on and off for 10+ years. Misdiagnosed as an ear infection and then trapped fluid in my inner ear. Told to take cold medicine that will dry up the fluid. After I was diagnosed with MS in 2013, was told by my neuro it was TN. I was put on Gabapentin and thankfully has worked great. If someone hasn't experienced TN, they can't understand just how painful this is. I have described it as being hit in the head with a hot poker and a taser at the same time. It only last a few seconds each time but it is excruciating. Sometimes I will have the bursts of pain for upwards of 200 times in a day!

      I hope for you and all who suffer from TN that the meds continue to work to keep it under control.
      RRMS: Diagnosed July 2013
      Assistive Device: cane.
      Meds: Copaxone, Ampyra, Vitamin D

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        #4
        Welcome to the worst club in the history of the cosmos.
        I'm sorry you joined.
        TN is as you described. An electrically charged hot spike jabbing in the face. Childbirth with no pain meds was a walk in the park compared to this (plus you get a cute baby).
        I'm "lucky" enough to have the atypical or type 2 version...the hot poker just stays there. 24/7/365. It is a much smaller poker. Anti-seizure meds help keep it down to a dull roar, but its never gone.
        My TN led to the discovery of my MS and is most likely caused by the MS.
        "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
        Verin Mathwin, The Wheel of Time by Robert Jordan

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