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How does ET affect one’s vision?
I have had ET for more than 25 years, many of which had been thought to be reactionary thrombosis. Corroborated by a bone marrow biopsy and aspiration, I have been fortunate to have no gene issues and platelet levels not to exceed 753k. I have read everything possible, been in a clinical trial @ John’s Hopkins and attended many blood cancer informational gatherings.
I’ve read that ET can affect one’s vision, but have seen few references to this, and need to learn more. I have some personal concerns and seek more information.
Please weigh in.
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I have polycythemia Vera for 1 year, started with double vision!
Before I was diagnosed I had a constant headache for 7 months along with blurry vision, occasional double vision, dizziness and vertigo. I saw an ophthalmologist, neurologist, pediatrist and internist in an effort to find out what the problem was. Only after a cardiologist suggested I see a hematologist/oncologist did I find out what was going on. After I began to be treated for ET those problems went away.
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1 ReactionET-CALR, 68 yo, female. Blurry vision at times and, less often, glittering migraine auras or dark spots in peripheral vision, often without any big headache. Maybe a couple of times per year. Auras resolve quickly.
The visual symptoms are infrequent or inconsequential. Kind if thing that, when you mention to the doc, they think you are nuts or it's menopause (same thing in most doctors' heads). So I have not reported these.
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1 ReactionMy doctors continue to tell me that they are not sure that my decades of visual migraines were/are directly related to decades of high platelet counts. (Both problems "began" somewhere in my late 20's and only now in mid 60's was I tested and diagnosed with first ET, and then immediately after PV.) I get cluster migraines that come on and off for a few days, then maybe also the next week or two, then none for many months. I have gotten blind spots in my vision, rotating shimmers, and in one or two scary cases, a sensation like theater curtains quickly closing and reopening in my vision. The last was when my platelets were at their highest over a million, and I was struggling with treatment choices--I do believe that was a brain/eye pressure thing, not random tension. Like nohrt4me, I can usually avoid big headaches with tylenol or just deep breathing/relaxing, but neck pain and nausea and extreme tiredness can follow eye episodes. I'm on Besremi and it (or fate) is now quickly bringing hematocrit and platelets down, even at just over half dose at this point.
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1 ReactionGod, yes, the "migraine hangover" is the worst part of the visual distortions. You feel tired and brain foggy for a day or two. Docs really don't know what to do about them. Migraines are typically caused by blood vessel constriction (aura) and dilation (headache). Hard not to believe ET, which causes vascular disruptions, isn't the culprit.