My journey with Visual Snow Syndrome.
I’ve had Visual Snow Syndrome for as long as I can remember. When I first got glasses in primary school, I remember wondering if it would make the sparkling go away, and trying (and failing) to explain that question to my parents.
The glasses, by the way, did not make the sparkling go away. And I stopped wearing them two years later.
This gif (which I found on the internet ages ago and now can’t remember the source for) is the best illustration I have found, of what my visual snow looks like.
The first time I tried to actually figure out what was going on with my vision, I was 21 and studying long hours in the library ahead of the final exams for my Bachelors degree. The later it got, the more stressed I was and the darker it was outside, the harder it was for me to see. Sometimes, I literally couldn’t read the text on my computer screen because there was so much static in my vision.
Deciding that this was just too inconvenient in the longterm, I went back to see an optician. I thought maybe I needed glasses again? And maybe they would help this time?
I… did not need glasses. And also, the optician had no idea what I was talking about. It was 2013, and the first paper on Visual Snow Syndrome would not be published for another year.
The optician vaguely suggested I might have migraine with aura? But, like, without the migraine?
Unfortunately this wasn’t a particularly helpful suggestion because “Panadol might help” (it did not help). And so, I stopped studying late and when I graduated and was less stressed, it was easier to see again. I went on with my day.
Melbourne is wonderful but it’s public transport infrastructure is… not.
Fast forward a year or so, and I finally decided it was time to learn to drive. I was 22 and I’d just moved to Melbourne, Australia from the UK. Public transport was not as good as I was used to and everyone in Melbourne seemed to drive everywhere, so I thought I’d better get to it.
There was just one thing. I was terrified of driving because sometimes the sunlight hit car mirrors in certain ways and reflected into my eyes, and the after images left me blind for minutes at a time.
That did not seem like a workable experience for a driver. It turns out it’s also quite a common concern among people with visual snow.
And so, off I went: to my GP and an optometrist, who referred me on to a specialist eye doctor, who referred me on to another specialist eye doctor. I spent a LOT of money on a LOT of different eye tests only to be told that, well, everything was fine.
“There is nothing wrong with your eyes,” my eye doctor told me. “So whatever is causing this is in your brain. But if you’ve had it as long as you can remember, it’s probably not going to kill you.”
So off I went. I didn’t start learning to drive, and I kept on not knowing what was happening. But I couldn’t really afford to see a neurologist, and it wasn’t going to kill me, so that seemed to be that.
This image in The Guardian is how I finally worked out what was going on with my vision.
That might have been that except for this image in an article in The Guardian which I randomly stumbled across in July 2016. As soon as I read it, I knew that it was what I had.
After that, I would occasionally google “Visual Snow Syndrome” and see if anything interesting came up. Sometimes it did - I’ve participated in probably something like 15 different visual snow studies since 2016.
As I joked to my PhD committee, there is a definite “me” bias in the literature these days…
I eventually received a formal diagnosis in July of 2019, from Professor Owen White of Monash University. And while it was nice to know for sure that I do indeed have Visual Snow Syndrome, it didn’t change all that much for me. The visual phenomena I experience have become a lot less intense over the last 10 years, as I’ve dealt with other health problems and learnt to manage my stress better.
At the same time as all of this was going on, I went back to university to study psychology. I thought I might want to be a therapist? Maybe? But completely by accident, I fell in love with science. And that’s how, in semester 2 of 2019, I stumbled upon the idea of studying Visual Snow Syndrome.
Below is an example of Gaussian Noise, which is an image filtering technique often used in psychophysics.
Psychophysics is a sub discipline of psychology which measure the way physical stimuli interact with sensory systems: how do the things we are looking at interact with our visual system to result in the way we see the world?
The first thing I thought of when I saw Gaussian Noise for the first time was, that looks like my visual snow.
It led me to choose a capstone research project on vision science to round off my Graduate Diploma in Psychology, and my supervisor for that project is now one of the supervisors for my PhD.
Note from the future: it is 2023, and this is not what my PhD ended up being about. Surprise! Melbourne spent 6 more months in lockdown in 2021, and I had to change my plans to conduct research online. But this is a nice reminder of what I initially thought I would be doing. Lol.
My PhD will use psychophysical techniques to look for differences in functional vision between people with VSS and healthy controls.
Basically, I’ll be investigating exactly where and in which circumstances people with VSS see things differently. I’ll be looking for precise measures and specific circumstances in which vision with visual snow can be shown to be different from vision without visual snow.