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I don’t know what this is. Recently coming from a pitch black room in the house and seeing light shine around the cracks of the door I was having dark elongated diagonal shadows between me and the door that moved as I moved my head. I don’t know what it is or the cause. I closed and opened each eye separately and it does it with both eyes and no the have diagonal shadows. Years ago I used to see something dark above my eyes in the dark and thought it was the frame of my glasses I was seeing in… read more
Answer Summary
Members connected over experiencing visual distortions in the dark, with many sharing similar phenomena including floaters, phantom eyeglass... Read more
@A MySpondylitisTeam Member thank you for starting this conversation about your eye care journey. You express your experiences clearly. I find it helpful. Most doctors will find a way to care for our symptoms, but, some might take 10x longer to arrive at what treatment helps the most. Sometimes a psychological concern of the doctor is a diagnosis of the physician's frustration or exasperation, when a doctor doesn't know enough to correctly diagnose or treat properly the patient. This happens all too often with our rare diseases, so we become our best advocate. Best wishes to you. You deserve, as do we all, to find a doctor who arrives most quickly to the best treatment plan. I hope others will add their eye journey, too.
This question is very good and important to share. Others will be going through this, too.
This does sound neuropathic, work with the doctors. Ask your doctors how can this inflammatory nerve damage be healed, and, how can any future damage be slowed down.
Eye inflammation from AS causes inner eye tissue to become detached, causing floaters. Floaters can be more quickly dissolved by an eye doctor using a specialized lazer in the clinical setting. I have this done periodically.
My eye floaters, at first was distracting. They seem like out of focused and diffused shadows of floating leaves or spiders on a thread. One looked like a minimalist drawing of a dove. Now, I just ignore them.
I see softly glowing edge lighting around the periphery of my eyes in the dark; also, I see blurry, soft glowing blobs, and sometimes flashes and stars and shooting stars. During intense flare-ups, I'll see bright white stars even while my eyes are open along with glorious fireworks when my eyes are closed!
Eye-sight loss is possible for a small percentage of those with AS. Best course of action is to minimize inflammation and nerve damage under the care of a good eye doctor and Rheumatologist. I use Prednisone eye drops when needed to enable recovery healing for the eyes and Sulindac tablets daily to control general inflammation.
Keep sharing your journey! I look forward to learning from you and others what helps them.
@A MySpondylitisTeam Member, do you think that you have what they call floaters in your eyes. It's not something that doctors can see but it can cause distortions at times with your eyes? That's one possibility 🤔 here's wishing you a joyful day.
@A MySpondylitisTeam Member. I got sudden sensory deafness syndrome from taking a prescription antihistamine singular. They took it off the market since then. It lowers the immunity too much I guess Like you I got a sudden virus and had vertigo and infected eat and went to doctor next morning and she did not recognized it was an emergency, A person has to have high doses of prednisone within 24 hours to save hearing but no one knew. I was sent to ear, nose and throat doctor two months later. The damaged nerve was seen on brain scan. Of course nothing could be done, I was devastated because it affected me terribly in conversations socially, driving, determining direction of sound if someone spoke or any sound. Ot always sounds like the opposite direction of what it actually is. Terrible! It came out a couple years later that Singulair was causing to get this when they would catch a virus, bad cold etc. Now I know how to test myself for deafness and what to do but I had no education in it as before Singulair this was a very rare occurrence, That's why I’m terrified of taking stuff now,
@A MySpondylitisTeam Member, thanks for mentioning the virus eating your hearing. I had that experience coming home from a work-trip, waking up with what seemed like a headcold except when I stood up I immediately fell over. Over next couple days it receded from messing up balance and hearing in right ear, but left ear never recovered. Went to ear doc who diagnosed it as "sudden onset neuro-sensory deafness". Doc explained that by the time I came to them, the condition was permanent, but if I had come in within a day or two, simple treatment with prednisone would have saved my hearing. It is not the virus but the inflamation response that kills the nerve. Learned that the CDC was trying to make more docs aware of the problem and treatment. However, when my mother had same thing no amount of explaining, threatening, or pleading with her doc would convince him that he should prescribe prednisone. She went deaf in both ears, alas. Spreading awareness of the problem - and treatment - could save a lot of hearing.
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