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    Nystagmus jerk dizzines

    Boy do I have it this week. Whooo! I have a pontine lesion that loves to act up and give me this problem. Holy Cow!

    I can't keep my eyes open or closed its the same dizziness either way. I am eating Valium like candy right now to keep from puking everywhere and taking Compazine.

    Anyone else get this with INO?

    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    #2
    Hi Lisa,

    So sorry you are dealing with this! Definitely not fun at all.

    Other than just taking Valium, you might also want to try Meclizine. I don't have INO, but had nystagmus with an awful episode of vertigo and dizziness earlier this year. Besides Valium (they even tried it through an IV), I was also treated with Meclizine.

    I hope adding Meclizine will calm things down for you. Other than that, you might need to be treated with a steroid. Took awhile, but that was the only thing that finally calmed things down for me.

    http://www.allaboutvision.com/conditions/nystagmus.htm
    http://www.merckmanuals.com/home/ear...d_vertigo.html
    http://american-hearing.org/disorder...nt-of-vertigo/

    Feel better ,
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      Thank you Kimba. It has been a horrible 6 weeks for me with my MS. I guess when it rains it pours.

      I will try the meclizine, its OTC.

      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Hi Lisa

        I also have a pontine lesion that gives me terrible nystagmus and vertigo. I feel your pain. It's the worst. I find meclizine helps me. When it's real bad I take 25 3 x a say then taper it back to as needed.

        Hope it helps you too

        Comment


          #5
          Yeah, meclizine does nothing for me. I think I am going to ask about the Ativan.

          Thanks
          Lisa
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            I'm sorry it didn't seem to help.

            It didn't do much for me when I was so sick, either. But now that I've added it with the Valium, it does seem to help when I've had some other episodes since then.

            I hope you find something else that helps get this under control.
            Kimba

            “When you change the way you look at things, the things you look at change.” ― Max Planck

            Comment


              #7
              Update: I started taking Ativan. It does work better than Valium in controlling both the dizziness and nausea together. Hope this helps someone else.

              Take care
              Lisa
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                dizzy, dizzy

                I also have bad Nystagmus episodes, on and off and I have tried Meclizine and Ativan (makes me too sleepy). I might as well throw the Meclizine over my shoulder. I do take a 0.5 mg of Klonopin but it is a Psycotropic drug.

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