Visual Snow: The Not So Invisible Disorder

I remember laying in my mom’s bed when I was 8 or 9 and staring at the multicolored dots that danced across my vision. In the dark of that early morning, I think I wondered what they were, and though I was a curious kid, I never thought to ask. So, for as long as I can remember, growing up, making friends, going to school, I didn’t ask. I never even thought that something as easy as tiny dots were unusual.

And it wasn’t just those awkward bright dots, it was also floaters, bright twinkling lights, ringing ears, and splitting headaches with flashes of bright zig zags, like an opening portal, in front of my eyes. I went to the doctor for the migraines, but when she couldn’t give me the answer I wanted, like everything else, I assumed it was normal.

I can’t recall the exact moment I realized it wasn’t. I was in my sophomore year of high school then. I just remember sitting around my friends at lunch and explaining to them that I discovered something wasn’t right with me. I went to the eye doctor soon before the pandemic started, and I asked about it. The doctor insisted it was a failure in the connection from my brain to my eyes, and that was that. I left it alone.

I also don’t remember how I found out about it, what I looked up or who I talked to, but the moment I heard it I knew it felt right: visual snow. Visual snow: “a neurological disorder characterized by a continuous visual disturbance that occupies the entire visual field and is described as tiny flickering dots that resemble the noise of a detuned analogue television”. I felt seen in that moment, finally finding an answer for the question I had been asking for so long.

Upon further research, I found a link to other issues I had, like tinnitus (ringing in the ears), migraine with aura (flashing lights or zigzag lines), random flashes of light, floaters, after image, etc. though these are not all the symptoms. Visual snow appears to be pretty rare, but there’s no way to know the true number since the disorder is barely heard of, and research is slim.

I found an Instagram account made for people with the disorder to spread the word and provide support called @visualsnowinitiative. The Visual Snow initiative is a group who are pushing for more research into the disorder in hopes of finding a cure. Through this account, I found a list of certified neurologists and one in my area who was recommended for treatment.

I went to this neurologist, Dr. David Katz, sometime during the early pandemic. He gave me multiple eye exams, checked my vision, and decided there wasn’t anything wrong with my eyes itself. I brought him my concerns, and he agreed that visual snow was the most likely case. He assured me that a good, healthy diet and exercise could help me on the road to recovery.

Though having a diagnosis was relieving, I struggled for a long time with the isolation and depression that came with my disorder. I have always loved sunsets or clear blue skies, and it’s something I will never see the way I should. I had days where even being awake was hard, because even with my eyes closed, I could see the tiny dots.

It took some time for me to accept what I could not change (at least not easily). I began to come to peace with my disorder and learn to tune it out. I’m a senior in high school now, a successful student and a happy kid. Though my disorder is nowhere near being as debilitating as a lot of other disorders or disabilities, I learned to live with it, to accept it, and to move on from the pain it caused me. I hope that if you struggle with an invisible disorder that you don’t feel so alone, and if you struggle with visual snow like me, that you can find ways to provide yourself relief. Though it is invisible, it does not mean you are alone.

Click here to find out more about visual snow.

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