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06/04/2011 06:41 AM

Can we talk abou eyes?(page 2)

Posts: 35
New Member

I don't know about the meds either, but I will tell you the eye doctor should have initially checked the pressures in your eyes. I have congenital retinal defects and the steroids I'm on cause lots of blurry vision, spots, and problems with light and dark. Most physicians cannot see changes on the retina you need to see a specialist who will literally take pictures of your retinas and this will indicate damage. It is all about how pale the retinal surface is this indicates decreases in blood flow. I do know that if it is not monitored you could lose vision or possibly go blind. DO get this checked out! Tawny

05/25/2012 06:06 PM
Posts: 9
New Member

Since this discussion is on eye problems, I thought I'd ask of anyone has Adies Syndrome. It causes the pupil to dilate all the time. I have it in my right eye. It is a real problem with light.

05/25/2012 10:19 PM
Posts: 440

Ohhh! I have been a migraine sufferer since the age of 8, optic migraines can vary from person to person and mine are quite unpleasant, my vision can get stars or black spots, then tunnel and even go completely black! Its really fun when you have your eyes wide open and you are in total blackness....I know the pain is soon to follow and I need meds and bedrest asap or I'm in big trouble. As far as the Plaquenil, yes there's a rare retinal side effect and the generic is hydrox.....whatever that long word you spelled earlier Smile when my rheumy put me on it he said to get checked once a year and if there were ever signs of retinal injury that I would have to immediately stop taking it. Well you know I didn't make it that far...hehe! Eye docs are a strange group, I would def get a referral from your rheumy to one that has a clue, I wouldn't trust the dummy I go to for reg eye exams to know much more! Best of luck....

06/04/2012 06:02 PM
Posts: 42

THAT'S where this headache is coming from: I was seeing those "grids" again yesterday but was too busy to think about it. Now today, out of the blue, splitting headache, eyes are swollen, burning, and cloudy, and screaming tinnitus to boot. I haven't had a bad headache in several months and didn't consider it could be a migraine, but now I am wondering...I too have had a painless optical migraine but just once, with the scintillating scotoma and grayed out blind spot. It was actually pretty cool looking.

06/04/2012 06:29 PM
Posts: 6150
Group Leader
I'm an Advocate

AmishCake....It sure sounds Ike your having a migraine, I was getting migraines constantly but haven't had one in months, don't know if it's because of the anti-seizure meds I take or the I.V infusion drug Rituxan I take every other week, whatever it is it's working, I will keep you in my prayers that this migraine goes away soon.


06/04/2012 11:55 PM
Posts: 1913
Senior Member
I'm an Advocate

Hey AmishCake, I've heard that some people get the optical migraines and then they know to expect the painful migraine. I've also heard that some people get the optical migraine and then never get the painful migraine. I guess it's all how the cookie crumbles. My optical migraines have pretty much dissappeared. I haven't had one since I think last fall. My doctors (Rhuemy and Ophtalmologist) both attribute it to tapering off the Prednisone. And Yes, I did take LenaT14's advice and got a referral to a Lupus knowledgeable eye doctor from my rheumy. I now get ALL of my referrals from.

At the present time, my only complaint with my eyes is this blurry vision that stays with me every morning until about noon and then dissapates. No idea, just stupid Lupus I guess, but I am headed back to the eye doctor on Thursday for my regular Plaquenil check-up.

Have wonderful days where you are.

Mary Kay


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