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Anyone else with visual snow/Auras?

  • By AuraSufferer

    Hi there, I am new to this forum. I am so happy to have found it. I have joined because I recently got a diagnosis that seems so unclear/unsatisfying, and I am really hoping others have heard the same thing, and are okay. (And have learned to live with visual snow).

    I had my first optical migraine/aura about ten years ago. It was visual and did not come with pain. Since then I get them maybe about once or twice a year, without pain. But as you know, they are terrifying b/c its a bright zigzagging line in your vision that you see even with your eyes shut! I thought I was going blind the first time I had one.

    A few weeks ago I started to get only what I can describe as shaky vision: everything is clear but its like a strobe light is flickering in my vision, sort of like steam rising or heat waves. I went online and visual snow seemed closest to what I am experiencing in terms of the movement, but I don’t see the dots.

    I went to the Dr, who thought I might be in a prolonged state of optical migraine, and she referred me to an ophthalmologist. He checked everything, said my eyes were in good shape, and if the issues persisted he wanted me to see a neuro-ophthalmologist, because I could see the movement when my eyes are closed.

    So today I saw the neuro-ophthalmologist. He looked at everything. His diagnosis was that we all have visual “noise” so to speak but most people’s brain’s know how to cancel it out. Because of my predisposition to auras, he said my brain has a harder time shutting the noise out… and now that I am getting older and recently got reading glasses my eyes are adjusting and my brain is not turning off the noise.

    He said I just have to learn to ignore it. I just wanted to hear from others, as it is VERY hard to just ignore this. I had a business meeting right after and I could barely focus with my vision all jumpy, and all I could think was “REALLY? This is normal and happens to a lot of people?!”

    Would love to hear your experience and if you have heard the same thing?

    About me: I am married, working mom. I do have stress in my life, but I have a happy life– and this has really worried me and really triggered anxiety which I try to manage.

    Thank you in advance!!!

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  • By Nancy Harris Bonk Moderator

    Hi AuraSufferer,

    Thank you for sharing your story with us – we’re glad you’re here!

    Are you experiencing this all the time? The symptoms of migraine with aura can be alarming, I’m sorry to hear you’ve been going through this.It’s good to hear you’ve seen your doctor and had your eyes checked out.

    Now, having said that, I’m not thrilled with the doctors response about “living with it”. You may want to seek out the expertise of a true migraine expert as these doctors may be different from neurologists in that they are board certified in headache medicine which is different than being certified in neurology. Let me share information on how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and
    https://migraine.com/blog/really-find-headache-specialist/.

    I find I suggest seeing an expert quite often. I’m now seeing my 5th true expert (5th time is the charm?) and finally getting somewhere.

    Let me know what you think,
    Nancy

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    • By AuraSufferer

      Thank you Nancy for the links! They are very helpful. I am also going to speak to my GP who was concerned and sent me to the first ophthalmologist. I believe she will find the whole “you’ll get used to it” diagnosis to be a bit simplistic. And yes, this new visual snow I am seeing is 24/7. I am not getting auras with it for now, thank goodness!

      I will update on my next steps. I hope you are on your way to recovery with the latest expert, and they are helping.

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