Treatment for Nystagmus

[ratsuchend]

Hi All,

If I may, I'd like to start with my MS history as a background to my experience with nystagmus.

I was "officially" dx'ed with RRMS in 2000 after my second attack (after my first in 1996 it was merely "probable" MS). Then 10 years with no clearcut attacks whatsoever. 2009 MRI with no enhancing lesions so did not qualify for MS DMDs (I am Canadian). Then in 2010 moved to Germany to do my PhD. Starting in 2011 I started to develop optic neuritis (ON) and in 2012 had a third attack, only pins and needles in R side and gait problems. Took Prednisone and the pins/needles went away but gait problems only worsened. October 2012 an MS doctor in Germany diagnoses me with SPMS and about the same time I develop Nystagmus as well as ON (which has been very gradually worsoning since 2011).

Doctors in Germany recommended that I take Gabapentin for the nystagmus, the reasoning apparently being that the Gaba, an anti-epileptic, could slow the nystagmus, which is an involuntary eye movement. However, according to MS websites there are other drugs that may be used to treat nystagmus: I've read of Memantine and even Baclofen.

A study has been done to compare the effectiveness of Gaba vs. Memantine for treatment of nystagmus and Gaba was found to be better. But different people react differently to drugs. Hence why a neuro I saw a couple months ago in Canada said I should switch to Mamantine if Gaba proves ineffective in slowing my nystagmus, and I have been on Gaba Gaba for maybe 6 months without great improvement.

I apologize for the length of the thread, but I am wondering if anyone has experience with these drugs for treatment of nystagmus, particularly Memantine? And what dosage have you tried? And was it successful?

Cheers,
Mark

[lusciousleaves]

I found baclofen helped my nystagmus. I was able to look up at the stars at night without the sky bouncing. It was nice.

It would be my first choice over the other, newer drugs, because it has a long-term, safe track record. My neuro says it's a pretty "clean" med, and is not a big deal to take it if it's warranted. Plus, it's cheap.

[Jules A]

I took a course of oral steroids. Not sure if it helped or the flare was going to clear anyway but about a week later my sight was back to 95%.

[JBWInColorado]

I was just diagnosed 2 weeks ago after going to the ER with nystagmus so bad I couldn't function. They admitted me immediately and put me on 5 days of IV solu-medrol, 3x daily baclofen, and klonipin 1x daily at night. By the time I was discharged 5 days later the nystagmus had improved significantly. Since my hospital admission on August 30, the nystagmus is *almost* gone, and I'm returning to work.

Good luck to you.