I started Restasis about 2 weeks ago (I think.. there goes brain fog, lol) and I was very pleasantly surprised it didn't burn at all. One drop in each eye 2x a day, 12 hrs apart. A few days ago, it started to burn a little after it had been in for about 3 minutes or so. Not painful, just a little annoying, like the burn you get right before your dry eye waters.
When I was a little girl, I could do a parlor trick (actually my whole family can, even my kids) that we call "wiggling your eyes" where we vibrate our eyeballs really fast. Someone called it nystagmus. Since we choose when it happens and when it doesn't, there was no cause for alarm according to any doctor we ever told about it. Including my new neuro who I did show it to since she's a neurologist and I heard it could be a neurological thing (I was there for possible stroke and didn't want to leave anything out). Well, about 6 weeks ago, I was reading and my eyes 'vibrated' by themselves for a second. I never do the parlor trick anymore since I grew up, and it caught me off guard. It happened about once a week for the next few weeks and then rapidly increased to about 4x a day, starting around 2 weeks ago. The night before last it happened 8 times, with about 5 of those 8 being within about 2-3 minutes. I called my neuro yesterday just to let her know that it is doing it by itself and she wants to see me monday at 3 when she opens, saying it is not a good sign at all :o. (She works at the hospital by day and has night office hours). Not sure what that means, but ok...
Fast forward to last night. I was driving my kids to my mother's house (an hour away) and came upon some road work with those orange and white striped barrels lining the work area. I'm not sure if it was me or what, but they seemed to be out of focus like as if they had no tangible edges. They appeared as if they were vibrating (if you've ever seen something vibrate so fast it doesn't appear to have edges, you know what I mean). My EYES weren't vibrating (I can't see anything when that happens) but the images appeared to be. Everything else was dark, so there wasn't anything else to compare it to, but the street signs all appeared to 'glow' up and down, like a glow emanated not side ways off the signs, but up and down off them. On the way home, same thing when I saw the barrels again. Stopped at the store for a half hour or so and nothing out of the ordinary happened. Maybe it's just the way the barrels look and everyone sees them like that, not just me? Maybe I just never noticed the glow of the signs and was 'seeing them for the first time' so to speak?
My opthamologist is closed for the weekend so I can't call her, but should I stop the Restasis until we rule out that it's the Restasis causing it? The vibrating eyes started BEFORE the Restasis, but they really increased in frequency since the day I began using it. Maybe unrelated. Any thoughts?
This sounds like a complicated affair and my guess is that the only way you will find out anything is to see the doctor.
Vertigo can have nystagmus on occasion but I would think that you would be aware of the vertigo related to your position. Don't panic---just see the doc and do the tests she needs to get a diagnosis. Panic prior to an emergency/trauma is just a waste of energy and a waste of good time plus it can put you into a flare.
Keep your mind busy with other things in order to stay on an even keel. Good luck and let us know how this turns out. Irish ;D
Irish is right, "Don't Panic". Tell your Dr the whole story that you told us. I do not know if it will have any bearing on the Dx but it is interesting.
I think "logically" that restasis wouldn't effect just one eye...that doesn't seem possible. Then again, you are able to control the normally 'involuntary' action, so it may have been able to trigger something that otherwise wouldn't have been possible in the average person.
Here's the link to Wiki about Nystagmus: http://en.wikipedia.org/wiki/Nystagmus
It has some interesting information that may be helpful for you...particularly knowing how you control it.
Best to see your doctor and see what he has to say.
Irish and Joe~ I'm trying not to worry. I'm doing my best to not think about it. Can't waste energy on it, lol! No vertigo though.
Anita~ it doesn't affect just one eye, it affects both. Just in case it IS the Restasis, I stopped using it. That link was really informative, thank you! I did see the video posted to the wiki and it doesn't look like my eyes. It looked like uncontrolled jerking, so I wonder if I really have nystagmus or something else? I did find a video that shows something more like what I experience, like fast vibrating: http://www.youtube.com/watch?v=BRMvZqdtDCg&noredirect=1
The guy that is doing it does a lot of blinking (which I don't) and his voluntary only lasts a second (like my INVOLUNTARY) but my voluntary can last 5 seconds or more.
I have actually had it 3 times while typing this. I'll find out tomorrow afternoon what's up. ***fingers crossed it's nothing bad***
Thank you for all the replies.
just a word of caution about using wikipedia as a source of information, it can be written by anyone and the information isn't verified the way a more reputable site with experts is (Ie: Mayo, Johns Hopkins, Lupus Foundation, Sjogrens Foundation etc...) It is fine for general info, but if you want accurate information on something, I would go to a more specialized source.
Nystagmus can be a neurologic sign of something going on in your CNS. Be sure to keep the appt with your neurologist.
Nancy
Thank you Nancy. I pretty much use wikipedia for general info that I then look deeper into with other sources. We can't use it in college or our paper automatically fails, for the very reason you mentioned. It usually has some really good useful info though! And I won't miss tomorrow's appointment for anything.
Wow Missy, boy did I mess that up. I have been struggling with double vision for a while (had a recent thread about) and getting checked by neuro on Tues. Anyway, I apparently followed one line and picked up another line (above it) and totally misread. I thought it was really weird about one eye. I should be more careful until I can see more clearly. Sorry.
Nancy, Wiki is a pretty good source for 'general' info and that's all I intended it for. It is, (as you said), written by anyone, but the information is basically correct and sometimes in more laymen terms so it's easy to understand and provide enough info to begin other research.
Please see your neuro, Missy. I was told that my one sudden incident of nystagmus was likely a TIA (I have a history of stroke from a blood clotting disorder). Yours needs to be followed up. Let us know how your appt goes Monday.
Joe, what friendly red letters those are! 8)
MissyLouWho --- I seem to remember that nystagmus happens to everyone all the time, more often when we're tired. I think that's one of the things cops are trained to look for when they pull someone over for possible impaired or drunk driving -- the nystigmus is more pronounced and slow. Hopefully, you've just been more tired than usual of late. As for those caution cones or barrels, it may have been the reflective paint that was doing a jig in your eyes.
That having been said, I'd still get it checked out, especially since it seems to be something you're familiar with that's happening more often than you're used to. It would be better to be safe than sorry! And don't forget to keep us in the loop!
And Anita, don't forget to update us after your appt tomorrow! :D
Well I am not sure how I feel about how the appointment went... I sat in the waiting room for an hour (never waited more than 10 minutes before) and read a book. The nystagmus thing happened 8-9 times in that hour. I explained what what going on and how often it was happening. I printed my original post and took it with me. She said it isn't anything like a stroke because my MRI from a few months ago was clear (I really feel like she had someone else's results for a few reasons but that's another story) and my EEG from a month or so ago was normal. She said it sounded like seizures or TIA's but both tests were normal. Then she told me I should see a psychologist because she thinks I am stressing myself out and making myself sick and could benefit from INTENSIVE PSYCHOTHERAPY!!! Apparently my new rheumy faxed her his impressions from our first meeting and said something about 'conversion disorder' being a possibility because of all the stress I'm under. I icily said to her that I didn't think that this all-too-quick diagnosis could alter my blood test results or make me have positive ana or sjogrens or lupus antibodies!!!! She said I could have positive tests and even the symptoms that go along with it and not have the diseases themselves....
Even though the 90 minute EEG was normal, she is going to try to get my insurance company to approve a 24-48 hour EEG that they originally denied when I was checked for seizures before.
I feel let down and made a fool of and made out to be this healthy person that WANTS to be sick. I am disgusted and the more the doctors talk to each other, the more they are grabbing onto the 'she's crazy' theory. I am really devastated and hurt right now. And to make it worse, my husband had the kids and when I picked them up so he could get to emt squad, he didn't even ask me how the appointment went. He wasn't late, but just said goodbye and left. He even called me and hour later to ask how to spell something and STILL didn't ask what the doctor said. I guess if he cared he would have. So I'm feeling a little low right now.
An ophthalmologist is diagnosing you with a stress disorder? Isn't that a little out of her field?
Quote from: A66eyroad on February 14, 2012, 06:02:28 AM
An ophthalmologist is diagnosing you with a stress disorder? Isn't that a little out of her field?
Sorry, I think I wasn't very clear!
I called my opthamologist to see if it was a side effect of the restasis, but had the appointment with my neurologist. The neuro is the one holding on tight to the anxiety theory. I actually spoke to my opthamologist today and she said it is not related to restasis and the eyeball itself shaking is a neurological issue stemming from the cns. My eyes looked great and she is faxing her report to the neuro to back me up. She said the neuro has to take it from there.