Living with visual snow is not just about dealing with the symptoms. It is also about trying to get people to care or understand when your symptoms are 100% subjective and disbelieved by almost all the professionals you see.
This article is my personal account of living with Visual Snow Syndrome. It is split into three sections: When I realised something was wrong, Trying to get help, and Living with it.
When I realised something was wrong:
Everything began when I looked at the carpet one day and there were lots of black dots dancing all over it, like the static on an old TV screen. It was a bit strange, but I didn’t think too much of it at the time.
But it didn’t go away. Even weeks later, every time I looked at the carpet, I would see these dots.
Then when I looked at the walls, the dots were there too, but in pink and green. I began to notice vague bands of shadow all over the walls. It looked like there were grubby, grey, rectangular patches all over them.
Again, I carried on without giving much thought to it.
It was when I was watching the darts on TV a few months later, that I realised something was definitely not right.
When I looked at the dartboard on the TV and then I looked away, I could still see it in front of my eyes. I would look at the TV and then look at the wall next to it, and there would be a ghostly image of the dartboard for about 10 seconds, before it slowly faded away.
10 seconds sounds quick, but when you think that your vision is normally instant, as you look from one thing to another, 10 seconds is a long time for an object to remain.
The more I noticed it happening, the more it bugged me. It happened with other things on the TV, too. When I watched the news and looked away, and I could still see the newsreader and their desk in front of my eyes.
It wasn’t an exact image, with colour, but an inverted, negative image in black and white, like this:
The TV became more and more difficult to look at, and I avoided watching it. But it wasn’t just the TV that was causing the images. When I looked at pictures on the wall, or pieces of furniture, they’d still be there when I looked away.
I began to notice mini flashes of light going off in front of my eyes, like those you get if you stare at a naked lightbulb and look away. I was feeling dazzled just from looking at a lightly coloured wall, or walking into a room with a window, even when it was not sunny. The TV became unbearable.
My eyes had become really sensitive to light, and I had to wear sunglasses whenever I went outside, even when it was cloudy.
If I got up in the night, the bright spots seemed to crowd in on me and block my view in darkness, and when I was in a brightly lit room, I could clearly see what looked dark blobs and lines right in front of my eyes, and they moved around as I moved my eyes around.
When I sat in my living room in the evenings with my partner and my cat, at times it became hard to make out the features of their faces in the dim lamp-light.
All these things were beginning to get uncomfortable, upsetting, and disturbing.
As most people do, I began searching online for my symptoms, to see if I could understand more about what was happening. I think I probably searched for ‘fuzzy dots in front of eyes’ or something like that, and I ended up coming across something called Visual Snow Syndrome.
These are the main symptoms of Visual Snow Syndrome:
- Moving dots over your entire field of vision, like snow or static
- Bright flashes of light or colour
- Small objects appearing to float in front of your eyes
- Being sensitive to light (known as photophobia)
- Images of objects remaining, even after the object has left your field of vision (known as palinopsia)
- Shadow images of floaters, that move as you move your eyes
- Starbursts around lights, such as car headlights
I was immediately sure that this was what I had: I could relate to all of it.
I discovered that the images that stayed when I looked away were something called palinopsia.
The blobs in front of my eyes that obscured my view were things called floaters.
I was glad to find a name for the symptoms I was experiencing, and that I was not the only one reporting them, but I was dismayed to see it was a condition that was not yet fully acknowledged by many medical professionals.
I read that there were doctors who thought it could be linked to migraine. Although I did get these, the eye symptoms were there all of the time, not just when I had a migraine.
From what I read, it seemed to be some sort of neurological disorder, but other than a few doctors that had showed an interest, it was largely unrecognised.
I had so many questions. I wondered in particular what had caused this to happen to me now.
I was also afraid that there might be something physically wrong with my eyes, and that my eyesight was deteriorating in some way. I knew I needed to get my eyes checked out.
Trying to get help
The first thing I did was see an ophthalmologist at my local Specsavers, and I paid to have as many tests done as she felt were necessary. I was continuously blinded by the lights she was shining in my eyes. The whole experience was disorienting and verging on painful, and I was embarrassed about coming across as a high maintenance customer, who had to keep stopping and waiting for their sight to recover.
The ophthalmologist was great, though. She told me that she could find nothing physically wrong with my eyes, which was a relief. She could see that there were some floaters there, but she said that was quite normal for someone who was approaching middle age, like me.
She went away to speak to her boss, and then came back and told me that they thought it was probably Visual Snow Syndrome. I had not mentioned it to her, because I hadn’t wanted to affect her opinion, so it was extremely validating thing to hear her say it. She said she would write a letter to my GP, asking her to review my medications in case anything could help.
I was hoping I might be referred to a neurologist. I had seen one when I was diagnosed with fibromyalgia, only the year before. I was wondering if this was perhaps linked, especially as it was all coming after I had had a serious, long period of mental distress.
Unfortunately, I came up against some resistance when I finally spoke to my GP.
After I pressed the issue with her again, my GP said it might be best to refer me to the mental health team, which I had only just been discharged from.
I tried to explain that I didn’t think it was connected, but she still made the referral. I had no choice but to back down and just go through the motions, so we could rule out mental health as a cause, in a process of elimination.
I waited about four months for my referral to go through and during that time I went back to my doctor yet again, because my eye symptoms were beginning to really upset me.
I had told a couple of my friends about what had been going on, they were quite shocked at what I was having to deal with. They encouraged me to go back to my GP and demand more firmly to see a neurologist. I did exactly that, but I was denied again. She said that there was like a psychological element to all this. Once again, I gave in and decided to just go with that idea and see it through.
Around this time, I had also been having increasingly severe dissociative episodes, which would occur when I became overwhelmed with emotion. I would get a sudden need to lie down, and my body would go numb. It felt as if my mind were separating from my body and floating away. It wasn’t nice at all.
These episodes became a more of a priority than what was going on with my eyes. When I was finally allocated a psychologist, she suggested we focus on them instead. It was fair enough, as the dissociation was by then causing the most disruption in my life at the time.
I was allocated the same care co-ordinator I’d previously had for about 5 years. I told her about my issues with the visual snow. I mentioned that it was quite a rare condition that doctors did not know much about (big mistake!). On hearing that, she instantly dismissed it.
She told me that she thought it was to do with stress. I didn’t feel at all stressed, and I didn’t agree, but once again I decided to just go with what the professionals were telling me. There wasn’t much else I could do.
Even if you know in your heart that the professionals are wrong, you often have to go along with their version of things, for as long as it takes to finally disprove it.
After a few sessions with my psychologist, I reminded her about my eye issues again. She said that she thought it was likely happening along with the dissociative episodes. I told her that the symptoms didn’t tie in with the other episodic dissociative symptoms, because they were there all the time.
A few sessions later, she once again attributed my eye symptoms to the dissociative episodes. Frustrated at having to correct her again, I said extremely firmly:
I felt rude, but it worked because she did listen, and she finally acknowledged that perhaps it was due to something unconnected after all.
I felt glad that she was finally listening to me, but what actually happened was that the eye symptoms were completely swept under the carpet – lost in amongst a number of other more pressing issues.
I am still having psychology to help with the dissociation, though it has been slow progress due to the lockdowns. It has helped quite a bit already, though. I still dissociate, but nowhere near as bad.
Unfortunately, my eye symptoms have not improved at all. They have been the same for well over a year now.
Although it is slow progress with the mental health team, I’m hoping that once I get the dissociation sorted out, we may be able to come back to the eye issue. Maybe they will listen to me then and we can look at other non-psychological factors? (I’m not holding my breath for a magic cure though, obviously.)
I do think that if you have had a lot of contact with mental health services, everything you experience gets attributed to your mental health, especially things that are harder for medical professionals to understand or solve easily.
In the meantime, I have no choice but to get on and live with it.
Living with it:
The walls are still covered with moving pink, green or black dots. Everything lightly coloured looks permanently dirty and cobwebby, and I’m dazzled and disoriented as I go about my day.
It is like I’m looking through mist or a smudgy, dirty window all of the time, and I often need to frown or squint to see detail. I’ve started wearing glasses when I read, use the computer, or watch TV, and although they sharpen up a little of the fuzziness, they don’t do anything to help with the visual snow symptoms.
A lot of the time I try not to dwell on it, because thinking about it too much can make me feel hopeless, trapped, and overwhelmed. Writing this has been difficult, because focusing on it makes me hyper-aware of how much it affects me, and it is a little depressing.
Lying in bed at night is probably the most difficult time of day for me, because when I look around the dimmed or dark room, I feel surrounded by moving swirls of dots, shadows, streaks, and shapes. The tiredness at the end of the day makes it feel all the more exhausting.
The most distressed I have felt through all of this was the moment I realised that the dots, shapes, and lights did not go away when I closed my eyes. Lying in the dark in bed, I realised there was no escape. I couldn’t get away from it, ever.
I felt suffocated and terrified beyond words, and I knew that there was nothing that anyone could do to help me, including myself. I had to get a grip on myself quickly: being that terrified made me feel like I really could lose my mind.
It is near impossible to truly convey what it is like to experience this every waking moment of the day.
I sometimes describe the symptoms to people as ‘tinnitus of the eyes’, in that it is a constant ‘noise’ in the background that you can’t turn off. At least with tinnitus, however, you can put on some white noise or music to block it out. There is nothing like that for my eyes.
In the absence of medical professionals’ input, I have my own theory about why I have developed Visual Snow Syndrome. It began not long after a period of severe stress and trauma, which I experienced over an extended period of time.
I believe that my neurological system became so painfully stressed, that I developed fibromyalgia, visual snow syndrome, and tinnitus, all around the same time.
The common denominator for all these things is that they are neurological.
Fibromyalgia is a neurological condition that was not acknowledged for quite some time by the medical profession. There is still not consensus on why it develops, but it often occurs after someone has experienced mental ill-health or a traumatic experience.
Your neurological system works overtime and tells your brain that you are in pain when you aren’t. I’m not an expert, but my theory is that, in the same way, my neurological system is working overtime when it comes to the input from my senses.
My sight is altered, because the signals carried by the nerves between my eyes and my brain are not working properly and going off in ways they shouldn’t, and the same is happening with my hearing, causing the tinnitus.
The hunches or theories of patients and sufferers rarely hold much weight up against the opinions of medical professionals.
Although I have had Visual Snow Syndrome diagnosed by an optometrist, I continue to remain in limbo as no other health professionals will acknowledge it.
I continue to live without any support in terms of how to cope, but I do cope.
I hope that one day more will be understood about this condition so people like myself will finally be believed, validated, and given more support.