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Nystagmus and Vertigo. Can anyone offer me some tips as to how cope?

  1. I can only offer support. I had vertigo early on, before my MS diagnosis and it went away. I remember standing in a buffet line, trying to balance my plate and pick out food, while feeling dizzy. My only advice(tongue in cheek,) is don't do that‍♀️.

    1. Hi CatDancer,

      I'm sorry that you are faced with nystagmus and vertigo. I haven't experienced vertigo, but have had mild nystagmus that was mostly disorienting. When it first happened, it showed up just before a big relapse. Steroids did help.

      I would recommend that you talk to your neurologist about how nystagmus and vertigo are affecting your quality of life and ability to get things done. There is no single answer.

      Hopefully other community members will share what has helped them as well.

      Best wishes,
      Lisa, moderator

      1. Thank-you. I have spoken with them. I use Meclizine when it gets bad or just slow down. I don’t want to do steroids again, so I’m riding it out.

    2. I have nystagmus but not vertigo. In my first relapse I had double vision. Now I get only blurry vision at times and sometimes trouble walking straight. I don't think I have vertigo as I don't feel the ground is moving or turning. Just blurry and double keeping balance.

      There are things that makes it worse and I tried avoiding if I can:

      Heat. Not only when it's hot outside but if my body heat goes up significantly. For example walking up long stairs, running in warmish weather, etc (I'm grateful I can do that!)

      Fatigue. I don't know what to do about this one.

      Visual noise. Supermarket aisles, department stores, hiking on uneven ground (rocks and roots) stress my eyes and sometimes (not always) trigger the blurry vision. I think that some fluorescent lighting does it as well (I'm not definite about this one yet). Puting utensils away in the kitchen drawer, or looking for a utensil in a drawer. Better organization of the drawers (removing clutter) can help.

      Keep hydrated. I don't know if it's a placebo but drinking water frequently seems to help with fatigue and other symptoms.

      I wish I had a magic solution. I someone has, please share.


      1. Thank you for all your replies. I saw my ophthalmologist and he said I didn't have nystagmus but another strange issue that can happen to MS eyes--not optic neuritis, thank goodness. I can't remember the name he called it though. I'll ask him next time. He did say that the dizziness could be caused from it. I did tell my neuro team about it but they questioned that it was due to MS and thought it might be due to something else. This has always been a frustrating experience for me. When I reach out, describing classic MS symptoms and then questioned that it could be due to another random thing. This has often sent me on a round robin of seeing other physicians, to find that there are no other reasons. There is one other thing that it can be from, yet I'm not sure how: I had a horrible TBI and skull fractures when I was a teenager. This has confused my doctors as to what's TBI what's MS. I reassure them that I've lived with a TBI for 22 years and for 15 of those years, I did not experience the things I do now. It get so frustrating sometimes. I also wonder if it's a side effect from the Tysabri.

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