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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!!!

    reply
  • 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

    reply
    • 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.

      reply
  • By Aurabelle

    I know this is an old post but I am hoping someone may follow up.

    I have 24/7 visual snow and have also been told by the neurologist to “learn to enjoy” my migraines (ocular/hemipelagic).
    Visual snow used to happen when I had a cold/couldn’t hear properly, but it is permanent now; night vision is troubled too.

    Wondering if anyone has (new) experience with this and if any vestibular tests were done? Perhaps a compensation for bad hearing, or if migraines are really to blame? I know there is a debate about their connection…

    reply
    • By Nancy Harris Bonk Moderator

      Hi Aurabelle,

      I’m so sorry to hear you are have a rough time with visual aura right now. I have heard from people who have extended aura, but rarely permanent, however having said that, I don’t doubt there are others out there like you. Hopefully they will be along shortly to share their experiences with you.

      By any chance have you had a thorough eye and hearing exam done recently? If not, that might be the first step to see what’s going on.

      Please keep me posted on how you are doing and I hope you have a low pain day,
      Nancy

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    • By Aurabelle

      Hi Nancy,
      Thanks so much for your reply. Yes, after 3 neurologists I was finally referred to a neuro-opthamologist. I had a scan for trochleitis, which was fine. There were no findings from all the other tests.
      Next is ENT for ear tests…
      I’m interested to see what others say about visual snow!
      Thanks again!

      reply
  • By Nancy Harris Bonk Moderator

    My pleasure, Aurabelle.

    I look forward to hearing updates from you!

    Nancy

    reply