Eyesight trouble - nystagmus?

[whatismyname]

my eyesight has been jumping all around. i have to keep one eye closed to focus on something. after researching online, it seems like i have Nystagmus. it is somewhat common in people with ms. has anyone here dealt with this? what helped you? how long did it take to go away? i will go see my neuro, but that usually takes a week or more. i welcome your stories of optical neuritis also.

thanks!


_______________
diagnosed ms in 2003
diagnosed primary progressive in 2007

[Waydwnsouth1]

I have nystagmus. That is one the tests my neuro used to dx me. Every now and then I notice it happening. To my knowledge there is nothing that can be taken for it.

[kbloom2]

Hello Waydwnsouth, I too have Nystagmis. It was really bad before I got dx'd. When my Dr put me on IV steriods at home for 3days It went away for the most part.

As for ON I had my eyes checked for that and I do not have ON, but she did notice I have slight Nystagmis. Maybe having you eyes checked for ON would help..
Good luck
Kari

[bulldogman]

I to have Nystagmis it is annoying but there is not much that can be done for it. I do not have ON either the Nystagmis is worse for me in the morning but I do have it at other times of the day. Just another symptom of MS that nothing can be done for. MS sucks.

[Red7172]

I was just dx was it at my last neuro appointment.
In my case it usually pops up when I do too much and start to get worn out or if I am too hot or too cold. (the usual story to much of anything is not good for me)
For me I just have to calm down and it will start to fade away.
My doc told me once I notice it popping up sit down calm down and try to stare at something and focus for a minute then look away and of course if it last longer then usual or more then 24 hours call him.

[Redwings]

Hi whatismyname:
Nystagmus is tough to treat. Success in treating nystagmus that's due to MS depends on what kind of nystagmus a person has and whether it occurs as a result of an inflammatory exacerbation (more likely in a person with RRMS) or of the degenerative progression in SPMS or PPMS.

If the nystagmus is a new onset that's thought to be inflammatory, it's sometimes treated with high-dose steroids, the same as any other relapse. Steroid treatment is less successful, and used less often, if the nystagmus has been present for more than a couple of weeks or if it occurs in progressive MS.

Some cases of nystagmus respond to drug treatment, but most don't. Of the ones that do, different types of nystagmus respond to different meds. Your neurologist will have to examine you first to determine what, if any, medication might be worth trying.

Like anything else with MS, there's no predicting what course your nystagmus will take. But as a general guideline, signs and symptoms that occur in RRMS tend to relapse and get somewhat better or recur intermittently for some amount of time (i.e., they relapse and remit). Signs and symptoms that occur in progressive MS tend to remain progressive. The National Multiple Sclerosis Society's brochure Vision Problems describes the remission expectation for nystagmus as "fair."

Some cases of chronic nystagmus can be managed through the use of optical devices, some can't. If yours doesn't get better, it might be worthwhile having an evaluation by a low vision specialist to see if there are any strategies or techniques that can make your vision easier to use.

[whatismyname]

thank you to those responding. nothing can be done about it? i searched and found this

"In Multiple Sclerosis it is usually caused by scarring in a part of the brain called the medial longitudinal fasciculus. It can resolve itself spontaneously and the brain can learn to ignore the jumping movements, returning vision to normal. Steroids can help as can the drug clonazepan. Also gabapentin. Anti-convulsants and muscle relaxants have also been used, as has Neurotin, a drug used for seizures."

has anyone tried Clonazepan or Gabapentin for their nystagmus? i am assuming/hoping this gets better and goes away. it is very bad, and i can't imagine living my life like this. I am guessing I will go see my neuro and get iv steroids. does it keep coming back at random times? i am interested in hearing others experiences.

[artgirl]

I have had nystagmus for 7 years now. When I first got it it was awful. I could not drive, read etc. I saw my opth and basically nothing can be done because the brain must adapt to the scaring. It took mine about six months to get better. I did however see a neuro opthomaogist and he was a great help. He gave me glasses that hepled me and I still use today.
I do not notice the nystagmus today only the doctor see it when he looks in my eyes but when I get tired or stressed I get blurry vision. I can no longer read or do computer work for long periods I must take a break.

I good news is your brain will adapt but it will take time and no one can tell you how much time. Anti sizure meds I feel will only make it blurry because that it a side effect of the med itself. Time is the healer. I am a graphic artist and still work today so be patient but see a neuro opth.

[luvumom]

I have not been diagnosed with it. But I have noticed when I am in bed reading I need to keep one eye closed to be able to read. I see my MS specialist next month. I will bring it up then.

[Redwings]

Steroids can help as can the drug clonazepan. Also gabapentin. Anti-convulsants and muscle relaxants have also been used, as has Neurotin, a drug used for seizures.

Hi whatismyname:
That's what I was referring to when I said in my last post that there are meds that might be helpful, depending on what kind of nystagmus you have. It might be interesting to hear stories of what's worked for other people. But those stories are really irrelevant to you based on a large body of medical knowledge of thousands of patients and to what what might work for you. That's why you need to see your own doctor to determine what might be appropriate for you.

And stories are interesting, but you'll have to see a neuro-ophthalmologist and/or low vision specialist to determine what might be helpful for you.

I hope you get some relief soon.

[wkikta]

I have Nystagmus, when I look to either the extreme left or right my eyes jiggle. Since that is the only time, I just don't do that. It can be entertaining to watch.