Nystagmus

Does anyone out there have nystagmus that's been attributed to their Fibromyalgia? Mine began suddenly many years ago and after MRIs, visits to ophthalmologists and many other specialists no one could figure out why. Mine has been ongoing ever since, though it worse at some times than it is at others, it has been steadily unbearable for the last three years. It was actually a new concern about it that eventually lead to my diagnosis. I don't hear of it often amongst us but my province issued an information booklet to all physicians about Fibro (what it is and how to diagnose it) in 2008 and it is clearly stated as a symptom.


I'm asking because to me it's the most debilitating part of it all for me,aside from the fatigue(which effects it greatly). I find the pain even more manageable than I do this. I'm just curious if their is anyone else out there with this complaint and if so what they have been able to do to get by. It makes me dizzy, uncoordinated and unable to focus or concentrate on anything. I can barely walk in the times it is really bad.

Thanks in advance to anyone with advice. I'm new here, by the way and if I can be of any help back I will try my best to be. :)

Hi normolly,

I had to look this up, so will add it http://en.wikipedia.org/wiki/Nystagmus

I have the twitching of the lids, but have not had the eye movement. What do they use to treat it?

http://www.rnib.org.uk/eyehealth/eyeconditions/eyeconditionsdn/Pages/nystagmus.aspx

I hope that you can get some relief from this!

Wishing you well,

SK

We were probably adding info at about the same time, but different having different links is good.

The only thing I have seen like this, was Tourette's syndrome, but that may involve more than just the eyes. I worked for a man who had Toruette's.

Lol...I always assume everyone knows what this is. Thank you both for posting a definition. I should have done that. To answer your question, I've only ever been prescribed Serc (sp?) and that was only recently. From what I understand its what they give to people with Minier's Disease and I don't have that (so I've been told) so that's perhaps why it wasn't helpful. For those looking it up or those in the know my eye movements are side to side, with a slow movement to one side and a quick bounce back to the other.

My Father was diagnosed with Tourette's and he has Fibro as well. He doesn't have nystagmus though. Interesting site, SK. A few things I hadn't heard. I was actually told not to wear my glasses unless I needed them as they were making my vision worse. I'm in Canada and I have never considered nor have I been directed to The Canadian Institute for the Blind.

I don't have Minier's (at least that's what I've been told). I have seen many neurologists and have had three MRI's.

Funny, interesting is always the word I hear, especially from the doctors...lol When it first happened I think I was only sent to so many doctors just so they could all see it. haha Thanks, angelonearth. :)

As I'm sure a lot of us were, I was diagnosed with depression and actually hospitalized years ago. My doctor now attributes all of that to the possible onset of my Fibro. The nystagmus started when I was 21, which was 6 years after that. I had had it since the summer of 1996. It is better at other times, but it is always present.

Thanks for your input. Yeah...I've always been unique in some way! ;) I think my doctors are of the theory that most of my mysteries are caused by the fibro. I really should find a way to download that booklet from my province because it covers a lot of symptoms you don't hear about too often otherwise. Thanks especially for that last link. When I'm not so sleepy I will investigate that further. I really appreciate It! :)

Sorry, I missed these questions. It definitely comes on with fatigue, stress and is especially bad around "that time of the month". The first ophthalmologist said it it would be like that. I should have mentioned too that it is accompanied by double vision. There is no specific trigger as it is always present.

I have been told on numerous occasions that there isn't much to be done short of surgery, which doesn't have a very high success rate. I have read that high doses of magnesium can help but I'm reluctant to try that without the aid of a physician. It has been a long time since I've seen a neuropthamologist; some progress might have occurred since then in regards to treatment. My fibro specialist is very good and the best I'm probably going to come by in this area, but he doesn't seem to know much about this and I don't think he is as concerned about it as I am.

Nomolly, I hope you have found some good information that can lead you in the right direction. I was told by my doctor recently that there are two things you don’t want to be: a landmark legal case or an “interesting” medical case! Unfortunately, you are the latter as was I. I am sure that many people on this site have also been.

Oh, without a doubt MBP-P! I was hoping to find someone as interesting as I am (in the way of the nystagmus I mean). Even if we couldn't help each other, we could at least vent and complain! ;)

A couple of those sights have been very informative. I really appreciate everyone's help.

Nomolly,

I found a few discussion groups on nystagmus that I hope might help you out a bit. It must be so frustrating to have such an unusual physical problem. I hope that by talking to other people in your shoes, you might be able to feel a bit better and find some answers to your questions. Here they are:

http://www.dailystrength.org/c/Nystagmus/support-group

http://www.thisisms.com/forum/general-discussion-f1/topic17592.html

http://arsenalwallpaper.org/soccer/nystagmus-discussion-board

Hope some of these are helpful!

Hugs,

Petunia

I see a doctor that specializes in fibro, myofacial pain syndrome (which I also have) and rheumatoid arthritis (which I don't). I will talk to my specialist instead of my GP and see if he is able to refer me. While they are supposed to be a team, my GP isn't very helpful at this point and was much more so when she was convinced I just had it all in my head.

I would rather discuss the magnesium with a neuropthamologist than my specialist as he seems quite content with the level of vitamins and minerals in my body, save for vitamin D.( I seem to have an absorption issue). I've brought up other supplements and he isn't to keen on me loading up on anything other than what he's suggested. He admits the nystagmus is out of his realm. I've only read about this magnesium thing on one site so I'm not so sure about it.

They sad thing about my city is that while we are big on research we are short on practitioners and specialists. I haven't been able to find a suitable replacement for my GP and my specialist is one of very few here that even believe in Fibromyalgia.

That's great, Petunia! Thanks so much! I will check them out later this evening and get back to you! Got some chores to do....

Good. Glad to know that they're useful. It helps just to know that you're not alone!