My Journey as a PhD- Visual Snow Syndrome

Today I am going to talk about something personal again. Last year I’ve been diagnosed with Visual Snow Syndrome (VSS) and I wanted to share my experiences.

First of all, what is VSS?

“Visual snow (VS) is a recently identified neurologic condition consisting of a constant positive visual disturbance described as uncountable tiny dots over the entire visual field. In addition to the static, patients very often report visual symptoms such as palinopsia, entoptic phenomena, photophobia, and nyctalopia”. (Puledda et al., 2020)

How I found out:

In retrospect I cannot pinpoint when exactly I GOT the symptoms of VSS, I might have had them all my life but I all of a sudden noticed them. I think I started to notice the symptoms after a quite stressful period when it became really difficult to read a certain book. Difficult is an understatement, it became impossible. The book used a particularly small, narrow font and basically no line spacing. What I saw was kind of a nervous picture, the lines and letter were kind of wobbling around and there was some sense of erratic movement that I could not pinpoint. In addition to this, things felt as if they were “burnt” into my retina. We all know this when we look at the sun too long and then look at something else, but I had it with everything that was slightly darker and in front of a mono-coloured surface. Moreover, these afterimages did not last 2-3 seconds but 30ish. I also noticed that looking at screens became difficult as if there was always something “in the way” and I tried to blink and squint but it did not help. Also, it was present 24/7, I COULD NEVER REST EVEN WHEN I CLOSED MY EYES!!


Symptoms:

So, my symptoms are very typical and include:

  • Visual snow (i.e. dynamic, continuous, tiny dots in their entire visual field)
  • Palinopsia (afterimages or trailing),
  • Enhanced entoptic phenomena (blue-field entoptic phenomena, self-light of the eye or spontaneous photopsia)
  • Photophobia (light sensitivity), and

In addition to this, migraine, as well as tinnitus, have been found in numerous VSS patients, suggesting that there might be a connection.

I think of VSS as tinnitus of the eyes…

This picture visualizes it quite nicely, but only shows half of what I see…

However, there is also an online page that lets you play around to visualize your symptoms. Unfortunately, I cannot layer e.g. VSS and the blurry vision, but this one comes quite close I would say:

http://VisionSimulations.com/visual-snow.htm?background=office1.png&density=0.67&speed=100&grainsize=1


Finding professional help:

But to continue with my story: Once I noticed the symptoms I stopped working and tried to relax, and thought it might be stress-related. I also called a doctor’s office about it but they also told me to stay put and wait a couple of days and to call them back if it did not get better, which it did not. So I went into the doctor’s office and we did a couple of tests, which were inconclusive. When I went back to the doctor the next day to get my blood tested he immediately sent me to the Eye Emergency unit at the hospital, where I spent my day going through tests, which, again, were inconclusive. My eyes seemed healthy. Based on my description I got the preliminary diagnosis: Visual Snow Syndrome. I had googled my symptoms the day before and I came across VSS before and TBH I was wishing for the doctors to tell me “Well, you’re going to be on sick leave for 2 weeks and then it is going to be fine”….but, unfortunately, they did not. I can tell you I was devastated. I did not want to have this.

Since it was just a preliminary diagnosis I was called in again a couple of weeks later, to see an ophthalmologist. He took quite some time to ask me questions and he also did some additional tests, again my eyes seemed healthy- everything pointed towards VSS. Luckily, he was one of the few that actually knew about VSS! After I had joined some of the Facebook groups, I later found out that it is not that common. He also ordered an MRI, because sometimes the symptoms point towards MS….uff…that was scary to know, but luckily it was not MS.

What was positive about this was that I knew what I had (most likely) but at the same time the ophthalmologist also told me that there is basically no help he could offer me, no treatment, no cure. He said that the VSS won’t get worse but he cannot really help me. He mentioned one medication, lamotrigine, which had shown SOME effects in individual cases. Lamotrigine is primarily a treatment for epilepsy and I decided to do some research into the trials that were done as well as into lamotrigine itself. After a couple of hours reading scientific articles I decided not to take lamotrigine, but to try to handle the VSS by myself- however, I do feel good that there might be an option in the future.


Back to my PhD…

As I said, after I got the VSS diagnosis, I was shattered and scared. I was ½ into my PhD and then this….I was hopeless because I already had tinnitus and had learned to live with it. I can tell you that it takes energy to not focus on it…or ignore it. But usually, I’ve become quite good at it. However, having something BESIDES that I also have to ignore all the time felt too much for me. HOW on earth was I going to do that?!* Doing a PhD is difficult enough….in addition to that, I just panicked because I thought my whole academic career was in danger…it basically IS reading stuff right?! After the initial breakdown and crying, I was entering the stage of denial, so I just stayed away from all screens for 5 days (which was a nice detox!) to test if it might just be stress. Yeah, it wasn’t that.

What gave me hope was my supervisor, who told me that there are people that are blind and have an academic career. I did not want to talk to him initially, because I was scared I could get fired or something (here in Sweden a PhD is treated as a job) because I could not fulfil my job requirements. However, I also had to accept that I could not work in the same way as before, so I decided to talk to him. I am really glad I did because he calmed me down tremendously. He even told me, that he knows of people that are blind and still have an academic career. That sounds a bit extreme, but it did calm me down and helped me realize that my career might not be lost. In addition to that, he also helped me to get a process going to get my workplace adapted to my symptoms. I am still amazed and grateful for how smooth that process went. However, since no one really knew what to do or to help me I had to find out myself what helped me and whatnot. I have to say that my workplace supported me incredibly much.

*I’ve talked so much about work and my PhD! However, I also wanted to point out that I am an avid gamer and was really worried about a potential end to the day-long gaming sessions….


Tried and tested remedies:

  • Coloured sheets: I ordered coloured plastic sheets from amazon ( https://www.amazon.de/gp/product/B07BGXXFC4/ref=ppx_yo_dt_b_asin_title_o09_s02?ie=UTF8&psc=1 ). I read somewhere that it had helped some people, but that it really was an individual preference. For me, the dark blue ones work best. I still use it for some days on my computer screen and they help me a lot. The only down-side is that I haven’t found fitting ones for my desktop screen, so I still see where the two sheets overlap, so I am still looking for the perfect solution!
  • Glasses: There is a specific version of glasses or glass colour that helps migraine patients quite a lot, since they reduce light in a certain wavelength (I think?!). They are pinkish, at least the ones that I tried (FL 41). I just used them for a couple of minutes, and they did not really have an effect but could help if worn for a longer time. At the moment I do not feel the need to buy them, but I might do it at some point.
  • Sunglasses: When my eyes are strained, my sunglasses gave me some relief. I have “normal” brown sunglasses, but I’ve tested polarized sunglasses as well. I am not sure why but they seem to help me even more. Might get some polarized ones when summer comes here in Sweden J In general, I can say that summer is more difficult for me, because of all the light…good that the winters are that long here in Sweden 😀
  • Meditation: My VSS is always there, day or night, but how stressed I am or tense DOES highly influence how much I NOTICE it. So sometimes, when I feel too nervous or restless inside it helps me to meditate
  • Podcasts/Videos: Before I noticed VSS that much, I used to read A LOT- don’t get me wrong, I still do, but I’ve started to look for alternative sources. Instead of reading a chapter on a certain theory, I try to find a video or podcast. Specifically for philosophy/ontology/epistemology, I found a couple of brilliant podcasts, that actually got me interested in philosophy altogether (e.g. Philosophize this! On Spotify)
  • Static Videos: There are a couple of videos on youtube that helped some people. It is basically static and if you watch it for ½ hour it might help with the VSS. Some VSS sufferers even claim that they’ve cured their VSS with it. For me, however, it only helped for a couple of minutes, well, my static stood still but got moving again after that. So I did not continue.
  • VSI: The Visual Snow Initiative (https://www.visualsnowinitiative.org/) is an active community that also cooperates with a research group in Australia. In 2020, they’ve released a VSS remedy program, however, I have not yet gone through with it.
  • PDF: There is actually a feature in Adobe’s program to READ the PDF’s. Sometimes it works excellent, sometimes it is just utter BS. I think it has to do with HOW the PDF is formatted, unfortunately. For me, it was more work to get it going that it was of actual use, but there might be more sophisticated programs out there.
  • Blue Light Filter: I’ve changed the settings on all my devices and have activated a blue light filter. In addition to that, I’ve installed LUX on my Laptop, so that my screen is constantly yellowy/orangy. Works GREAT!
  • Colours: Colors in general play a huge role for me. Specifically in more office settings. For me, “nervous background” is great, if there are different colours and textures mixed together I do not see my visual snow, but a plain white wall…uff…please kill me..or my eyes. However, what works for me is grey. At my home office, my wall is grey, my desk, my laptop, the sides of the screen, all of it has kind of the same colour, which is great. At work, my table is now dark too, and I get dark sides everywhere around it, so I basically have a dark box 😀 It sounds depressing, but for me, it is just perfect, because there is not BRIGHT wall anywhere close to my eyesight!
  • ReMarkable 2: I think what made the biggest difference was when I could order this e-ink tablet through work. When I finally got it was like a revelation…My god, I could finally READ pdf and books again! I could continue to write a page about this marvellous thing, but in a nutshell: It feels like it has saved my life.

Current Situation:

Some days I just cannot continue to work and then that’s just it. I try to not be angry with me, disappointed or sad, it is just what it is. I will finish my PhD. It shook me quite much, to the core and it took a couple of months for me to enjoy life again and just feel like “yeah I can do it!”. There are still days that feel awful, some days I just wake up and the visual noise is more present than others, depending on how I’ve slept, my mood and all that…

However, on the positive side, I can tell you that I’ve started to read actual paper-based books again. Most of them work, especially the ones that have bigger font size and spacing. I’ve noticed that I should buy books in-store or check them before I buy them, I think I bought a book recently that I just opened and thought, well NOPE! But then I can still use the blue plastic sheets which make my life a bit easier.

It does suck to have a neurological disease that cannot be cured or treated or ANYTHING, but the human brain is also very flexible. For me, it took around 9 months to get used to it, to not wake up every morning, checking if it got better or not. Now, I just wake up and do what I gotta do. Some days are bad, and I cannot use the screen, but I have found my workarounds, and most days I barely notice it. Of course, there is a whole spectrum of VSS intensity, but for me, it just took time to accept and adapt! For now, I feel good and the VSS does not hinder me from doing my PhD…or playing games 🙂

Reference:

Puledda, F., Schankin, C., & Goadsby, P. J. (2020). Visual snow syndrome: A clinical and phenotypical description of 1,100 cases. Neurology, 94(6), e564–e574. https://doi.org/10.1212/WNL.0000000000008909

One thought on “My Journey as a PhD- Visual Snow Syndrome

  1. Hey there,
    I just came across your blog as I was looking for some VSS news in the internet. I myself suffer from this disease for more than 10 years now. And as I just finished my own PHD, I wanted to let you know that it’s possible to do a PHD with VSS! Do not think about it too often and just keep going. You’re going to make it!

    Like

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