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    Trigeminal neuralgia and 4ap

    I went to a new neurologist a couple weeks ago - an MS specialist. He said my "face pain" is trigeminal neuralgia and could be triggered by hot food (thank goodness it is Summer). Anyway, yesterday it was horrible.

    A while ago I was taking 4AP (kind of like Ampyrs). I stopped because it made me crazy dizzy. Yesterday, I thought I would try it again to see if it was better.

    I then discovered that it can make my TJN worse. Believe me I won't try again! Much as I like being able to walk, I also don't want the pain!

    Thought I should share my experience so others don't need to go through it.

    #2
    Originally posted by newme View Post
    I went to a new neurologist a couple weeks ago - an MS specialist. He said my "face pain" is trigeminal neuralgia and could be triggered by hot food (thank goodness it is Summer). Anyway, yesterday it was horrible.

    A while ago I was taking 4AP (kind of like Ampyrs). I stopped because it made me crazy dizzy. Yesterday, I thought I would try it again to see if it was better.

    I then discovered that it can make my TJN worse. Believe me I won't try again! Much as I like being able to walk, I also don't want the pain!

    Thought I should share my experience so others don't need to go through it.
    The intensity and severity of TN is awful.

    Have you called the neuro to see what med they might have to help. There are several meds that should at least make it bearable, if not completely alleviate the pain.

    I suffered from what they thought was TN (I think more like the atypical brand)...but they used
    TN meds. Tegretol was the first line, and it worked, but after using for awhile, I had a rash reaction. Neurontin worked too....and after awhile another allergic reaction. At this time in my MS it seemed like every drug was causing some sort of allergic type reaction. I also took Elavil, but it made me too groggy.

    We ended up using a combo of baclofen (this was before my spasticity days) and a low dose benzodiazepine...Clonazepam. It didn't make the pain go away completely, but made it background noise, not screaming pain.

    I know of someone who has had TN for quite a while and she finally had the ablation surgery, and it worked for her, at least so far (sometimes they say that procedure has to be repeated.)

    Sorry to hear about the TN. Hope you get a handle on something that works...call the neuro.

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      #3
      I agree with rdmc, TN is horrific. Having it on top of MS, well that's just nasty. "Lucky" us.
      Interesting to note your reaction with 4AP, and thankful that my walking is still very good.
      I have the "atypical" or Type 2 TN, and am doing much better taking Tegretol.
      If you're not taking something to control your TN pain, it may be a good idea to ask your neurologist. There is no reason to live with it when there is help.
      "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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        #4
        It's the worst!

        Trigeminal neuralgia completely incapacitated me. My neurologist gave me a combination of Tegretol, Clonazepam, and Neurontin. It completely took away the pain.

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          #5
          Hi newme:

          Thanks for sharing your experience. It might prevent someone else from trying 4-AP or Ampyra with TN. If you had asked in the forum before doing it, some other posters could have warned you not to do it and spared you some pain.

          The drugs that are generally used to manage TN -- carbamazepine (Tegretol), clonazepam (Klonopin) and gabapentin (Neurontin) -- reduce pain by calming down overexcited nerves.

          4-AP does the opposite. It helps with walking and other tasks by stimulating nerves that aren't transmitting electrical signals correctly. As you found, further stimulating nerves that are already overexcited in TN only leads to more pain.

          Hopefully someone will learn from your experience.

          Comment


            #6
            I agree TN is awful. I wish it was not allowed to get more than one nasty affliction, at least at a time. I hope every is going better.

            Question How long did it take before you had to increase meds for TN?

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