I Have a Rare Visual Disorder That’s Like Being on Psychedelics All the Time
"It's a really unique kind of brain problem," says neurologist Dr. Jason Barton.
Photo by Jackie Dives
This article originally appeared on VICE Canada
While living on the top of a mountain in the Kootenays of British Columbia, I realized something was wrong with my eyes. I saw light patterns in total darkness. Those patterns swirled, they switched. They were constant, day or night. I was also suffering from debilitating migraines at the time, so I was worried they were connected. In a way they were, but not in the scary this-must-be-brain-cancer way I assumed.
After months of tests, waiting, and hand-wringing, I was diagnosed with visual snow disorder last fall by Dr. Jason Barton, an optho-neurologist. "You're not going to go blind, and you're not making it up," he assured me. "It's a really unique kind of brain problem."
Symptoms range from typical migraine stuff like light sensitivity, to the more trippy parts that I experience constantly—objects with tracers or comet tails (known as palinopsia, or smearing), high color contrast, and active sparkly light in my vision. I also have a very hard time looking at grids and geometric patterns. It's a very psychedelic experience, and there are patterns absolutely everywhere, constantly jumping out at me.
Barton has seen 16 patients, including me, with this "curious and interesting" condition over the last seven years. The 16 of us have several things in common—enough to make a diagnosis.
In a 2014 research paper published in the journal Brain, the condition is described as distinct from both "persistent migraine aura," which is the visual component for migraines, and acid flashbacks, also called post-hallucination perception disorder (PPD). The paper collects different symptoms and puts them all together under the same umbrella of visual snow disorder, but it doesn't offer much to someone like me with questions about its causes and treatment.
Inevitably, I wondered if this visual stuff was brought on by psychedelic use, or by the medications I took trying to control my migraines. Had I done this to myself? Or was it brain damage? Something wrong with my neck? A concussion? Or cancer? I tried not to google my symptoms, and pushed to see a specialist.
I didn't see Dr. Barton first, I saw a student resident. She tested my reflexes and peripheral vision. All were normal.
She then asked me to look at the wall, shining a very bright light right into my eye and asking me to tell her when I could see again. The blotch stayed. It took so long to regain my normal vision it got awkward, with her waiting and gently prodding while I tried to keep the panic out of my voice. That was the only test that showed anything abnormal with my vision.
A doctor who doesn't know about visual snow might just think it's a normal thing that happens in the eye, called entoptic phenomena, or photoreceptor noise. To some extent everyone sees a bit of noise, but people like me with visual snow see more of this normally-invisible data. Visual snow often shows up with tinnitus, which I also have. It's like a part of my eyes and ears don't know how to switch off.
"Most of us in a quiet environment will be aware of a little background hum," explains Dr. Barton. "In the case of vision, most of us aren't aware of any speckling texture to our vision, but if you look at a bland blue sky, or a very featureless white wall or something like that, then you might be able to say, 'Oh yeah, there is a little bit of this speckled noise pattern,' but normally we're not conscious of it."
Because I have severe migraines, I also get wavy patterns in the middle of my field of vision. They look a lot like heat lines on a hot road in the distance. When a migraine attack is coming on, everything, including the visual snow, gets more and more intense. Like right now, it's spring in Vancouver and the pattern created by the cherry blossom petals falling on the gray sidewalk can be overwhelming.
The color also drops out of one of my eyes, leaving me with one greenish eye and one reddish eye for the most intense part of the migraine attack. It's a lot like wearing 3D glasses. Also terrible, terrible pain.
The latest research on the disorder say it's located in the brain, not the eye, and likely related to the neurotransmitter serotonin. Drugs like LSD, MDMA, psilocybin, and SSRIs also change how our brains deal with serotonin.
The last time I did psychedelics, it was mushrooms I had picked and dried myself. My friend and I chowed down, and I took a low dose. We walked around a pond, circumnavigating again and again. It took us hours to figure out how to walk on the street.
Just as the mushrooms were starting to work their magic, it became no fun at all. The feelings that come with the mushrooms were pleasant, but tinged with a kind of growing dismay I'd never felt before. That's the moment when I really knew what visuals now, as I've started calling it, really meant.
As the gorgeous spring colors and the shimmering water of the lake took on that extra sheen, that bursting-with-life look, I wanted to get off the ride. It's just so similar to what I deal with every day, it wasn't special or fun. Only more extreme than the daily visuals I live with, totally out of my control.
Barton says a number of people with the condition report illicit, psychedelic drug use, while others develop visual snow after coming off antidepressants.
In the most recent case Barton diagnosed, this was the story—she became aware of "drifting rain" in her vision after coming off SSRIs. I also experimented with sumatriptan, a class of serotonin-affecting drugs, while trying to control my migraines, around the time I became aware of the visual snow.
According to Barton, neurologists have long known that playing with serotonin levels can affect how the brain interprets visual data, and that the previous generation of pharmaceuticals, before SSRIs, were known to cause the smearing of objects as they move through the field of vision. So far the link with serotonin comes closest to explaining why the visual snow, at least in my case, looks a lot like psychedelic hallucinations.
Barton has tried treating this with medications, experimenting for around a year in one case. He's also looking into ways to test what is happening, and to use those tests to better explain how these chemical systems act on seemingly separate parts of the brain.
For me, pharmaceutical treatment doesn't appeal. Instead I try my best to appreciate the strange visual adventures my brain decides to take me on. The world is a fascinating, trippy place every single day.
Just last night at a dinner party, I went into the bathroom, which was all white tile. The floor was a one-by-one inch grid. On top of that vibrant pattern my brain saw a new sparkly textured grid dancing overtop of what was there. It was beautiful, and if I had the time (i.e. not hiding in the bathroom at a grown-up party like a 15-year-old) it would be a good place to spend an hour or so just lost in it.
I think teen-me would think this is very cool, and certainly parts of it are. I like the idea I have a weird brain. I especially like that it's not degenerative.
As for psychedelics, good sense and doctor's orders would suggest it's time for me to stop. We'll see how that goes.
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