MS and Vision !!!

[DON439]

I have MS,and Nystagmus the involuntary movement of my vision.
Please advice if any drugs,medication or clinical trials exist for Nystagmus?
Every thing is moving up-down for years now.
PLEASE HELP

[DON439]

Show my nero yesterday,told me taking NAMENDA or ARICEPT and NEURONTIN
can help the NYSTAGMUS vision symptoms daily use ... So 3-4 more pills every day ,just to have a better vision..... ok.

Don

[DON439]

BOTOX helped me with Nystagmus for one to two weeks , and then came back.I Have to take another shots for BOTOX .
No worries for the pain with the BOTOX. They using liquid for the pain around the eye area , and no pain at all.

Don

[jensequitur]

So sorry that your nystagmus isn't going away.  I have this on and off, and it comes back when I'm having a flare or when I'm tired.  It's been more active recently.

As to what I do?  Sleep.  Sleep until my eyes stop jittering around.  Which gets old...

I hear they can inject botox that will help... but that makes me nervous.

[grams363]

I have found gabapentin helps for vertical nystagmus.  I take 600 mg's 4 times a day.  Grams363

[santana8]

Hi, I am fairly new here too. The people here are very kind, understanding and supportive. I do not have a dx yet. THe neurologist has been trying to figure out  what my dx is for two years now. It is Adem for now unless I have a second attack or new lesions on MRI, then if this happens It will more than likely be MS. Most of my lesions are where the central vision center in my brain is. My vision has been the most affected . I have a left inferior harmoneous quadrant visual field defect. With this everything I look at has the bottom right corner missing. I have 20/20 VA, and none of the damage is in my eyes.It is all in the brain. Anyway I haven't seen a whole of anything in two years. It has completely taken my ability to drive. They say I don't have nastagmus, but I have read a lot about it. Hang in there, there are a lot of us who do have struggles with our vision, and we can help eachother through this!

[DON439]

Thank you all for your support and info you provide me. Yes, I have good cyber friends they  DO understand.

[doublevision1]

Like T-Lynn, I too have internuclear ophthalmoplegia and nystagmus.  I developed horizontal double vision during my first major MS attack in Sept 2007.  The double vision persists although apparently continues to improve slowly, according to regular eye testing.  This problem is apparently linked to a lesion on my brainstem.  Thankfully my visual symptoms are limited to this, and I have no optic nerve involvement.  I wasn't aware of my downbeat nystagmus until I read it in my last neuro report; nobody discussed this with me.  I guess mine is not severe as I am not aware of it.  I'm not aware of the rapid movement and it as yet does not seem to affect my vision.  
The only meds I'm aware of that may provide some relief are the same that T-Lynn talks about.  

I thought I had read somewhere that certain types of lenses for glasses or contacts may help to mitigate the visual impairment caused by nystagmus.  Has your ophthalmologist recommended anything?  Are you seeing a regular ophtha or a neuro-ophtha?

db1

[Rena705]

Hi Don and Welcome to our Forum!

I am not able to offer any assistance I'm afraid as far as the Nystagmus goes but I can offer support and friendship!

It would be great to get to know you better and I feel as though you would be a wonderful addition to our family!  I too read your journal entry and you have a very solid idea as to what people with MS are facing and deal with every day!

I am looking forward to having you here as I am sure that you have a lot to offer.  I hope that someone here is able to offer some assistance that will help your nystagmus!  I have had to deal with vertical double vision in the past and am very empathetic to anyone who has to deal with difficulty seeing.

Lots of Hugs,

Rena

[young at heart]

WELCOME TO OUR CYBER FAMILY,

I HAVE NYSTAGMUS A FORM CALLED INTERNUCLEAR OPHTHALPLEGIA (I HOPE I SPELLED THAT RIGHT)

I HAVE FOUND THAT MY SPASMATIC MEDS HAVE HELPED.

I'M ON BACLOFEN,ZANAFLEX,VALIUM,ATIVAN AND THEY HAVE CALMED THE INO DOWN.

I DON'T KNOW ABOUT ANY TRIALS.MY NYSTAGMUS GOES BACK AND FORTH.

WISH I COULD OFFER MORE

T-LYNN

[essdipity]

Hi, Don, and welcome to the best web forum ever. We're glad to have you.

I am lucky not to have eye trouble from MS--apparently I have a 'silent' lesion on the right optic nerve. However, many here do suffer from nystagmus, and there will be many to offer suggestions for you that are helping them. Hang in here and others will be along.

It would be nice if you posted a bit more about yourself. I read your extensive 'Please understand' journal entry and found it very insightful. Hope everyone checks this out. People here DO understand, believe me. You're among friends!

ess