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Ocular migraines

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I've had some migraines in the past, but not too often. Since starting tamoxifen I've had more, one lasting ten days in December. Oncologist is aware I've had them, plus cognitive issues and some dizziness. In the last month, I’ve had 6 episodes of seeing dark flashing, along with dizziness, and a headache three of those times. Optometrist, PCP, and ophthalmologist all suspect it is just ocular migraines. I am glad they say this, and they are the experts I was told today to keep a diet diary, which is frustrating because nothing is new in that realm.. It is scary to me this is happening kind of suddenly. I hope it is tamoxifen related, but I am concerned it is something more.

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  • moth
    moth Member Posts: 3,293
    edited February 2022
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    fwiw, I have these. I've found that being super careful about bright lights, esp winter low lying sun has helped. Draw curtains,, wear sunglasses and brimmed hat if outside. Also drop brightness on computer & phone. When they do happen, I drink some water & lie down and cover my eyes - mine usually pass within an hour. Mine are generally the flashing type like the one in this article this https://www.reviewofoptometry.com/article/visual-a...

    I hope you get some relief. They're a pita

  • waves2stars
    waves2stars Member Posts: 140
    edited February 2022
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    Moth, your kind and reassuring reply is worth a lot to me! Thank you for the tips

  • piperkay
    piperkay Member Posts: 132
    edited February 2022
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    I've had those a couple of times, pre-BC. Well, pre-DC diagnosis. They were earlier in the year that I was diagnosed. With the first one, I thought I was having a stroke because of the way my one eye sort of went blurry, then the zigzagging flashing began. No headache, though. I was at work, and we called 911, but it took the EMTs so long to get to the office (20 minutes) that the whole thing had subsided. I went to an emergent care clinic, but there was nothing left for them to look at. So I just left and everything was fine. A couple of months later I had a much stranger experience when my left side became almost paralyzed for an hour or so. I was at a family party with many doctors present and they said no real evidence of stroke, and again the whole thing resolved in about an hour. This time, though, I had a brain MRI done which was all clear, thankfully. I started my own research and came up with the ocular migraine self-diagnosis which seemed to explain all the symptoms. What's frustrating, though, is that "ocular migraine" really is a diagnosis of exclusion which means that everything else that might cause the symptoms has been excluded with testing leaving only the ocular migraine conclusion. Over the next couple of years I thought I had a mild one a time or two, but basically I've never had something like the first two again. All this to say is that you're not alone in being worried, but there are benign reasons to explain why these weird symptoms are happening, even unrelated to your tamoxifen, which I have never been on. Still, it's disturbing, and you should keep an eye on it, so to speak.

  • Margay
    Margay Member Posts: 2
    edited February 2022
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    I started having ocular migraines (several a month) in the months before getting diagnosed with de novo stage 4 cancer, and I wondered if these may be related. However, I also realized that they faithfully appear if I consume those powdered drinks high in vitamin C or if I eat multiple oranges a day. As these migraines have been associated with some types of foods, I believe that mine are triggered either by high amounts of vitamin C or carotene (or by one of their metabolites). I've been steering clear of those, and this all but stopped the ocular migraines.

  • waves2stars
    waves2stars Member Posts: 140
    edited February 2022
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    PiperKay, your experience sounds so horrifying! Of course those sound like symptoms of stoke, or even MS or an aneurism! I’m so glad they were able to exclude all that, and you were able to have imaging. It is reassuring to me that you had such dramatic symptoms that have almost vanished. Thank you for sharing that!

    Margay, it is hard for the mind not to jump straight to brain mets, and must be more so for you at your stage. Now that you mention the powdered drinks, I realize I have been drinking powdered electrolytes a couple times a week since January, around the time I had the black flashing! I was getting migraines before, but not like this, so maybe something this simple is causing them to be worse. Maybe I will do a little experiment this weekend to confirm! Even if it’s not that, it’s good to know something as innocuousas vitamin c can become a problem for some!

  • Margay
    Margay Member Posts: 2
    edited February 2022
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    I was reassured by a neurologist and an ophthalmologist that these are just ocular migraines. And it is quite striking how they ceased once I stopped drinking high vitamin C drinks. This was a couple of years ago, and it still holds true…

  • waves2stars
    waves2stars Member Posts: 140
    edited February 2022
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    So I am walking around, minding my own business, not eating dark chocolate, and boom, the weird dark flashing is happening again. I was only told to keep a food diary. My head doesn’t hurt, just feels foggy. I didn’t think to ask if I need to restrict activity, like my daily walk, until it resolves. Is it okay to try to ignore the flashing

  • piperkay
    piperkay Member Posts: 132
    edited February 2022
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    Yes, Waves, it was certainly terrifying, and I was positive that something was terribly wrong! But the articles on ocular migraine I read even mentioned the semi-paralysis, so I guess I just clung to that and the clear MRI, and just moved on (- to breast cancer!! LOL!) Who knows what I was eating or drinking at the time that might have contributed, but whatever it might have been, apparently I don't ingest it anymore because it has not happened now in several years. I do keep it in the back of my mind, and if any of that flashing or zigzagging appears again, I'll pay close attention, but unless it's drastically more severe, I imagine I'll just sit down a while and let it pass. Hoping for the best outcome for you!

  • cowgirl13
    cowgirl13 Member Posts: 781
    edited February 2022
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    Stress could bring some of mine on.