What is it like to live with Visual Snow Syndrome?

This article is my personal account of living with Visual Snow Syndrome.


When I realised something was wrong:

Everything began when I looked at the carpet one day and I could see 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 I realised that when I looked at the walls, the dots were there too, but they looked pink and green. I began to notice vague bands of shadow all over the walls. It looked like there were moving grubby, grey, rectangular patches all over them.

Again, I carried on without giving too 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 was bugging 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 in dim lamp-light with my partner and my cat, at times it became hard to make out the features of their faces. That made me feel sad.

All these things were beginning to get uncomfortable, upsetting, and disturbing.

I started 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 or lightbulbs

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 40.

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 influence her opinion, so it was validating to hear her say it. She said she would write a letter to my GP, asking them 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 a period of poor mental health.

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 she would like to refer me back to the mental health team, which I had been discharged from some time ago.

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 likely a psychological element to all this. Once again, I gave in and decided to go along with it and see it through.

I was allocated the same care co-ordinator I’d previously had. 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, sometimes you have to go along with their version of things, for as long as it takes to finally disprove it.

After a few sessions with the psychologist focusing on other subjects, I reminded her about my eye issues again. She said that she thought it was likely happening along with some dissociative episodes I had been having. I told her that the symptoms didn’t tie in with the other episodic dissociative symptoms, because they were there all the time. She listened, but then the eye symptoms were completely swept under the carpet and lost in amongst a number of other issues that we discussed.

I eventually completed the psychology sessions and was discharged from the mental health team once again.

Unfortunately, my eye symptoms have not improved at all. They have been the same for well over a year now.

I do think that if your health record has mental health issues on it a lot of what you experience can get attributed to your mental health by medical professionals, especially those symptoms that are harder for them to understand or solve easily.


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.

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 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 the input of medical professionals, I have my own theory about why I may 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 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 began 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 against the opinions of medical professionals, but I think it is important in this situation to try to understand why this has happened.


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.


4 thoughts on “What is it like to live with Visual Snow Syndrome?

  1. Mikael Roth Official 14/09/2021 / 02:48

    Hi!

    I read your story about your VS. I don’t know for how long you have had it, but my VS started when I was 13-14 years old and today I am 30 years old. I have tried to live with it and just try to do things that makes me happy.

    There have been moments when I have been just laying in my bed and focused on it, and it really makes me depressed.
    But how do you feel about your VS today?

    Mine is maybe not the worst but when I am tired, eat bad and is very stressad my VS gets really bad.

    I just want you to know that you are not alone, I also have VS and if you want a friend who understand I am here.

    I know it is hard to say but we have to try to fight it and try to live our lives even be it is really hard sometimes. When I am busy with something or just working I don’t think about that much.

    Take care of you for now, and I am here if you need a friend who also has VS.

    // Mikael from Sweden.

    Like

    • Zoe 23/09/2021 / 10:50

      Hi Mikael

      Thank you so much for your really kind message. I have only had VS for around 2 years, though I have heard that a lot of people have it from when they are quite young.

      I think you are right that it is better to try to ignore it, as when you focus on it, it becomes more difficult to cope with.

      Since I wrote this post, I have been referred by my optometrist to an eye clinic at my local hospital and I am waiting to have some further tests in a couple of months. If there are any updates that could be helpful for others to read about, I will write another post about what happened.

      You take care too, and it is always good to know that we are not alone in this.

      Thanks,

      Zoe

      Like

  2. ashleyleia 25/01/2021 / 15:52

    It’s so frustrating when people assume things are psychiatric in nature. If nothing else, health care providers should be able to plug visual snow into Google Scholar and find articles on it in neurology journals. Hello, refer to neurology maybe?

    Liked by 1 person

    • Zoe 25/01/2021 / 16:21

      It does appear that those of us with a history of interaction with mental health services are less likely to be believed when we present with symptoms that are seen to be out of the ordinary. My GP also seems to feel that neurologists don’t deal with any of ‘that kind of thing’. There do seem to be only a handful of doctors in the UK that give it much credence, from what I can make out.

      Liked by 1 person

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