Has anyone found a drug out there that truly helps with the nystagmas?
I haven't found a drug but I'm currently going to occupational therapy and during their evaluation she found that I have a problem starting with my vision. She is giving me exercises to do with my eyes. Even my eye doctor didn't pick this up and certainly didn't suggest anything.
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An eye specialist at mass eye and ear put me Namenda.
This is a drug which is used for dementia and alshymers, but when also used in larger doses, dampens the effects of nystagmus.
After taking it for over a month, I find that my vision is more comfortable. It doesn’t actually improve my vision, but I find that I tilt my head less and can look straight on more comfortably.
It also has effects on my mental awareness and I find that I suffer less from fatigue which was a problem.
I use 3,4 diaminopyridine. It’s been amazing! 3 sometimes 4 doses pee day of 2 tabs each time. It’s not covered by my drug plan so it’s around $300 each month for me. But worth every cent as I couldn’t do anything before and was wheelchair bound without it.
Originally I had to use vallium. But currently I'm using clonazapam to help along with keppra. It doesn't totally get rid of it but it helps me.
No drug REALLY works. The question here is...'does everyone know what nystagmus really is'? It really shouldn't bother a person much, as if you weren't diagnosed with it, you probably wouldn't even know you had it.
Well obviously you don't have it or it is Not truly a problem for you, there are many forms, but I do have it an every time I walk my eyes shake like they are in jello...........I don't drive any more it is worse at times mainly when I move my eyes trying to look at something I've learned to slow it down when it gets real bad by turning my whole head to the right and tilting it back. If it starts up when I am reading,watching TV or on the computer sometimes I can slow it down by tilting by head far back then forward and stretching out my neck muscles. Some times I just get severe attacks of it for no apparent reason these attacks are ALWAYS accompanied by dizziness. I see a neuro- ophthalmologist but it's kinda just an experiment with the drugs like everything else in life "What's good for the goose is not ALWAYS good for the gander"
Misti I have the same kind of nstagmus that you have and as yet haven’t found anything that helps. Its the worst part of my Ataxia and would make my life sooooo much better if I could find an effective treatment for it. I do notice that my diet affects it but no single thing can be pinpointed. when I’m eating a lot of carbs and processed food it becomes much worse. yesterday I met a woman with MS who is successfully treating her symptoms with vitamins and diet changes and really looks great. I’m going
to pick her brain for more info. She swears by Sunflower lecitan and Hemp oil for improving nerves and mylan. She did say that she improved her vision a lot with “yoga for the eyes” (find on youtube). will let you know if I find anything, and if these things help me.
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That's the worst along with my balance,no other symptoms [yet]. I have also noticed my diet playing a part way worse when I eat alot of glucose,I even hd the test to see if my ataxia was because of gluten intolerence but the test was negative. Interesting to see if "eye yogo" would help with nystagmas,never heard of that. I am trying all sorts of vitamins though and trying to cut back on carbs...........I think we should really cut OUT the glucose. Please keep in touch would me interested in anything you may find out.
maryseas said:
Misti I have the same kind of nstagmus that you have and as yet haven't found anything that helps. Its the worst part of my Ataxia and would make my life sooooo much better if I could find an effective treatment for it. I do notice that my diet affects it but no single thing can be pinpointed. when I'm eating a lot of carbs and processed food it becomes much worse. yesterday I met a woman with MS who is successfully treating her symptoms with vitamins and diet changes and really looks great. I'm going
to pick her brain for more info. She swears by Sunflower lecitan and Hemp oil for improving nerves and mylan. She did say that she improved her vision a lot with "yoga for the eyes" (find on youtube). will let you know if I find anything, and if these things help me.
Yes glucose does it to me too. Early on I found coke with sugar set off my natagmus/vertigo so bad that I couldn’t do anything for about 15 min. – not stand, walk, or even watch TV. Overstimulation of the nerves. Its actually a little better now but still affects me some. No effect with sugar free coke.
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Blood sugar plays a major role in stabilizing SCA symptoms. It is imperative that you abstain from all forms of sugar be it honey, maple syrup, fruit sugar or artificial sweeteners as well as grains. Carbohydrates are also a culprit. The paleo & high fat diet (good fats such as found in avocados, nuts, flax/lecithin/3-6-9 oils, fish etc.) are best for us. Coenzyme Q10 has greatly helped to ameliorate my fatigue. My neurologist also recommends 400 mg. of Vit C daily as well as 1200 mg. of CoQ10. The UK started doing research on stem cell therapy for ataxia but not on human subjects. China has been using stem cells on humans for a while, but according to the UK the treatment is very expensive & the results not always long lasting. A cure will be found, & I pray it will be in our lifetime.
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My eye Dr. said I did not have nystagmas. He was wrong. Jericroth
That’s very strange!
Most times I can’t read. Can’t stay on the line. Very frustrating.
Maybe this why you have difficulty negotiating the site. I also have eye problems…I often need to read things slowly, line line… This is frustrating…but necessary.