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What is going on with my vision?

I’ve been suffering from non pain related ocular migraines since I was about 12. The first was very memorable for me b/c it was the only time I’ve ever vomited from one.
My moniker is reflective of my experiences with them and how I try to describe them to ppl who know nothing about them. I tell them my vision starts to disappear in a point in the center of my vision and slowly continues to grow till I can’t see in half my field of vision. I can’t drive, watch tv, read, nothing while this happens. I have to pull over if driving. I explain the sensation as looking through a Swarovski crystal with blinding sun behind it, hence crystaleyez. Lasts about 30-45 minutes with sometimes lingering flashes and difficulty seeing. Never followed by a headache though which I am unapologetically thankful for.

I saw my pediatrician that day (I’m in my late 40s now, male) and was referred to an ophthalmologist who diagnosed me almost immediately with ocular migraines. There’s a constriction in a vein in your brain causing your eye to flash and lose vision. He said if no pain follows, count your blessings. His treatment regimen? Which I’ve followed like religion since diagnosed, hydrate, caffeinate, and sugar. He said eat a snickers bar with a coke and a large bottle of water and I’ll be damned if it doesn’t lessen the severity of the flashes and the length of the event. Maybe it’s psychosomatic, but it works every time. If I can’t get to those 3 things within the first 5 minutes of that initial vision loss, I’m in trouble for the next 45+ minutes.
I used to suffer from these 3-4 times a year at the most in adolescence. During my early adulthood I wouldn’t get them that frequently but my lifestyle choices were questionable, heavy drinking, smoking, frequent recreational drug use, nothing hardcore but bad enough. Oddly, during this time period almost no flashes, for long stretches of time. In my late 20s I clean up my act, figure I better if I want a future. I had totally forgotten about the episodes then BAM! my old friends return with a vengeance and with much more intensity. Now I’ve been clean and sober for the better part of 20 years and I find I get the episodes quite frequently. Sometimes on bad days twice a day. Again, never followed by pain, but crippling for the 30-45 minutes they occur.

30+ years ago, the ophthalmologist was very non chalant about the episodes (I still see the same Dr by the way) and he still seems as non plussed today as back then.

Just wondering if anyone else has experienced a similar metamorphosis in occurrence? Intensity? Use of various substances over the years? I know that’s personal but we are anonymous here and I promise I won’t judge. Judge not lest ye be judged, know what I mean?
I could go on for hours with stories but I’m sure you all have better things to do. Reason I researched this today and found this forum is because I had 2 episodes in 3 days and they’re usually about once a month. Searched if frequent ocular migraines were something to worry about and was directed here, although I’m not finding any answers I figured I’d share my story. See if my little remedy could help anyone else!

Hang in there guys. It can only get better, right?

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Comments

  • Anne
    10 months ago

    Hi:
    I got these type of migraines in childhood – exactly as you described. I’d see a dot of light that wouldn’t disappear when I closed my eyes, gradually more and dots would obscure my vision until I couldn’t really see. I’d sometimes vomit and then the headache would hit. I would have caffeine, aspirin, rest and when I woke up it would be gone. I didn’t get an episode like this (although I got many, many other types of migraines) until my 40s. Migraines evolve. I know with my visual auras, calming down helps – I don’t know if that’s just because I’m giving time for the aura to run its course. I don’t know if you’ve ever gotten an MRI? That’s what a lot of doctors do when you have migraines to rule out other causes before making the diagnosis.

  • Nancy Harris Bonk moderator
    1 year ago

    Hi CrystalEyez,

    Thank you for sharing your story with us! Let me see what information I can give you that may be helpful.

    “Ocular” migraine is not a diagnosis, rather a descriptive term according to the International Headache Society’s International Classification of Headache Disorders, the gold standard for diagnosing migraine and headache disorders. Migraine aura, with or without pain has similar symptoms you’ve described. You can read more about this here; https://migraine.com/?s=migraine+aura&submit=Go.

    When we have new and/or different symptoms, its always a good idea to let the doctor know so he can rule out anything more serious. You may also want to see a true expert who is board certified in headache medicine, which is different than being certified in neurology. When you get a chance, this information explains who these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope that helps!
    Nancy

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