My journey to a diagnosis of visual snow syndrome

Topics mentioned: disability and mental health, anxiety, eating problems, depersonalisation

About: Leila shares her experience of visual snow syndrome, what symptoms she had, how it affected her mental health and how she eventually got a diagnosis.

Visual snow syndrome is a neurological condition that affects how the brain processes visual and sensory information.

The main symptom is seeing constant TV-like static across your entire field of vision. For some people it’s transparent, while for others it’s coloured. But it’s always there, whether your eyes are open or closed. 

The condition can also cause a range of other symptoms, like after-images, trailing images, floaters, flashes of light, light sensitivity, tinnitus (ringing or buzzing in the ears), migraines, dizziness, difficulty concentrating, anxiety, depression and depersonalisation (feeling detached from yourself and as if the world around you isn't real).

I've lived with visual snow for as long as I can remember, although I didn’t know what it was until recently.

When I was around four or five years old, my visual static became noticeably coloured in dark or dim lighting. One night, I pointed this out to my mum and described it as "little insects flying at me". She couldn't understand what I meant and assumed I was just having a nightmare. After that, I brushed it off as something normal and assumed that everyone could see what I saw.

By the time I was 14, my symptoms had become much harder to ignore. The static seemed heavier, and I began experiencing constant after-images, trailing effects and flashes of light. Watching television, using my phone, completing schoolwork on a computer and even being outside in daylight became increasingly difficult. I also started seeing dark and coloured floaters more frequently, especially when I had bad migraines.

I didn’t know at the time, but I was also experiencing blue entoptic phenomena. This is when the movement of white blood cells through the blood vessels in your retina become visible against white, bright or blue backgrounds, most commonly the sky.

Although visual is in the name, visual snow syndrome was affecting far more than my eyesight. I began experiencing tinnitus, dizziness, brain fog and worsening anxiety. I developed depersonalisation, which can make you feel detached from yourself or as though the world around you isn't real. I also developed an eating disorder and started skipping meals, which only made my visual snow symptoms worse. Living with these symptoms had a significant impact on my already rocky mental health.

Realising that these symptoms weren't normal was frightening. I became convinced I was going blind, which sent me into a spiral of anxiety and triggered multiple panic attacks. So at age 14, after a significant flare up connected to my eating disorder, I finally decided to go to the opticians.

My eye tests all came back normal, which made sense in hindsight because the problem wasn't with my eyes. It was with the way my brain was processing visual information.

My symptoms only got more bothersome, so my mum sent a follow-up email to the opticians requesting another appointment, as I knew something was wrong. The email never even got a reply.

Luckily, I already had an appointment with my eye hospital for strabismus surgery with, so I was able to discuss my concerns at that visit. From there, my eye doctor referred me to a neurologist who specialises in visual snow syndrome. When the neurology appointment finally came, I spent three long hours undergoing tests to rule out other possible conditions.

After speaking to the neurologist – who was so kind and helpful – I was officially diagnosed with visual snow syndrome at 15, ten years after first telling my mum about the static. 

Even now, I still find it strange to think that people can look at the world without seeing static in the background. It's something I've lived with for so long that it's hard to imagine seeing things any other way.

If you're experiencing symptoms that sound similar to mine, know that you're not alone.

I'm still in the process of finding ways to cope – there isn't a cure but there are ways to manage the condition. For example, I find my visual snow gets significantly worse when I'm not well rested, when I'm dehydrated, or when I study too hard. But it's at its absolute worst when I've skipped meals. Try to work out what makes your symptoms worse and remember to take care of yourself. This disorder doesn't have to decide your quality of life for you or control you.

To those who feel alone in this battle, I hope my story encourages you to reach out to someone, get a diagnosis, and find ways to cope.