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Nystagmus in SPMS

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    Nystagmus in SPMS


    I have had nystagmus since about 2012, in which time I have transitioned to SPMS from RRMS. Right now I'm taking Gabapentine in a very high dose (3600mg/day), which certainly contributes to drowsiness though has not affected greatly - my vision still flickers incessantly, and I have become legally blind as a result of it.

    I am wondering if anyone on this board is afflicted with this condition and has any suggestions for treatment. I will soon try Memantine for the Nystagmus, hence I'm wondering if anyone else here has tried it? Has anyone tried any CAMs, such as acupuncture?


    Hi Mark:

    I don't have nystagmus, but I've read a lot about it.

    Who chose memantine as the next drug for you to try, and is there a particular reason for it? Memantine might help with nystagmus, but in trials on people with MS, it has shown to make MS symptoms worse, leading to a decrease in the quality of life for many of the people in the studies. A clinical trial actually had to be stopped early because of the deleterious side effects in people with MS.

    There are other drugs that can be tried for nystagmus, so you can decide if you'd rather try one that doesn't have a history or making life for people with MS worse.

    There are optical devices and electronic devices that can help to minimize the effects of nystagmus on vision. Have you had an evaluation by a low vision specialist? Have you been evaluated by an optometrist? Do you have a null point? If so, have you tried prism spectacles to see if they help with use of the null point? Have you tried contact lenses to see if they're appropriate and helpful? Are you using any low vision devices for your vision in general?

    Your post doesn't suggest that you've tried anything in particular besides gabapentin to help with nystagmus, and nothing to suggest how you're handling low vision. The old adage applies: you won't know until you try. So what have you tried that you didn't mention?


      Hi jreagan70,

      I actually haven't tried anything other than Gabapentine for my nystagmus. I read the results of a trial comparing Gaba vs. Memantine in nystagmus, which found Gaba to be more effective. So I decided to stay with Gaba and put up with the constant flickering. At least it helps with sleep, and insomnia has been a problem for me, like many with MS.

      I came to the notion of using Memantine from a website on which many drug treatments, as others, are suggested:

      But maybe something else could help, such as lenses or Botox injections, which I could look into.



        You could call me wild eye Paul. I have had Nystagmus for 13 years. People say you have the most beautiful blue eyes and I say come a little closer and they see what nystagmus does to your eyes. Thanks to the SPMS it was just a matter of time before my eyes were effected. If yo live south of the Mason-Dixon line, I would highly recommend a neuro Ophthalmologist at Emory University in Atlanta, Ga. The doctors name is Dr. Nancy Newman and she is a straight shooter/NO bs. I have visited her twice and she gave me options other than surgery.

        Number 1 gabapentin, #2 Botox shot in the eyes (NO,NO,NO!). #3 Wearing a patch over one eye. I just had to face the fact; I have the worst kind of nystagmus. My eyes go side to side, up and down, and in a circular motion hitherto unknown to man. Dr. Newman was nice but considering the option's gabapentin was the choice. My history of treatments was gabapentin, later joined with Clonazepam. This combo which I tried on my own, does the trick of stopping my nystagmus for awhile.

        My neurologist wanted to try me on namenda(??) off label, but it was just wasted effort. I tried the eye patch but it made me feel like frito bandito. I have not tried prisms or special contact lenses because just wearing my glasses emphasizes my nystagmus. I wish there was a mystery pill but there isn't. I do pray that you have a much simpler nystagmus than I. If you do I would definitely recommend eye surgery after finding the finest NeuroOpthamalogist that you can. In closing, I will add these drugs these drugs to try (gabapentin plus 2 baclofen).