Visual Snow Survivor - Matthew

My name is Matthew and I suffer from visual snow syndrome (VSS). I work as a research scientist and am from New York! I have suffered from VSS since 2008 when I was 17/18 years old. Right around my 18th birthday I noticed a large dark floater in my left eye. I thought I was going blind or something very serious was going on. The floater slowly got bigger, darker, and longer until it stretched across my entire visual field in my left eye. Then, I noticed the ringing in my ears (tinnitus). Then the static/snow and Blue Field entopic phenomenon set it and was noticeable against solid surface, in the dark, and against the sky. I slowly noticed my night vision worsening as well. Many folks believe they know what triggered their VSS. A certain medication they took, an illness they had, a drug they tried. I do not know for certain, but my best guess is that my symptoms started after a bad migraine with aura. I suffered with Migraines as a teenager and had one at least once every few months. I continue to suffer with migraines to this day.

When it all first started, I visited every type of doctor you can imagine. I saw a primary care provider, optometrist, neurologist, retina specialist, ophthalmologist and a neuro-ophthalmologist, etc. The list goes on. No one could tell me what was going on and no one at this point had really heard of VSS. Medical care providers accused me of having anxiety, making it up, doing drugs and lying about doing drugs. It was very disheartening to be treated in such a way when I was just looking for support and trying to figure out what was going on with my health at such a young age. I had numerous test performed including CT scans, MRIs, MRIs with contrast, and EKGs.

Fast forward 5-6 years to my senior year of college and I noticed some of my symptoms seemed to be worsening and there were some new ones. I now saw slight trails off of bright lights and surfaces, I saw after images when looking away from objects, my night vision continued to get worse, and I noticed it was very difficult to see in low light settings and my static was getting denser. At this point I started to do my own research again and I stumbled on a large community of folks that seemed to be experiencing similar symptoms and having similar issues getting a diagnosis. That is when I first learned the term “visual snow.” It was strangely comforting to finally be able to out a name to the condition and at least some sort of explanation as to why I had been experiencing these strange sensations and visual disturbances.

Thankfully I was referred to the Flaum Eye Institute in Rochester NY and was seen by a world-renowned Neuro-Ophthalmologist. I had every eye exam and test you can dream of and everything came back normal. After extensive examination the Dr. officially gave me my first diagnosis of visual snow syndrome. She said it was rare, nobody understood what caused it or how to treat it, but she assured me I would not go blind. It was amazing to not be dismissed by a medical professional and actually get a diagnosis. From there, I mostly learned to live with my condition. I finished college, worked in the private sector, went to graduate school. I have an amazing career, a wonderful girlfriend, supportive friends, family and pets I love very much.

My symptoms stayed relatively stable from that point forward until this Fall. I had two migraines after exercising within the same month and since then my symptoms have continued to worsen and deteriorate. My floaters have exploded and exponentially increased every day since, my static is much denser, my low light vision has gotten significantly worse, my night vision is worse, my tinnitus is louder, I have on and off headaches, I see afterimages more often and for longer periods of time, reading dense text in a book or on a screen is very difficult because the words shimmer, shake, and move around (this actually makes me nauseous), I have extreme light sensitivity (fluorescent lights are extremely difficult and can cause migraines), digital screens are very hard for me to look at (televisions, computers, smartphones, etc.) and I have to make extreme adjustments to use them on a daily basis for work and for pleasure. I am unable to watch tv or use computer or phones in the dark as the contrast really seems to set my symptoms off and it is too harsh for me to look at. I also now see orbs and arc of light throughout my visual field throughout the day (I believe these are pressure phosphenes) and they can be really strange and distracting. I have bouts of extreme fatigue, brain fog, confusion, forgetfulness, anxiety and depression. It is extremely hard living with a chronic illness, let alone one that is a mystery and has no treatment, cure, or official prognosis. Until the pathophysiology of the condition is understood I am stuck living with a very messy visual field.

I have made adjustments for now and am surviving. I have multiple pairs of glasses with different types of filters to help with certain lighting situation and so digital screens are not so harsh on my eyes and do not cause headaches. I have special filters applied to my work and personal computers. I require the brightness to be turned down and night mode to be turned on for all of my digital devices so I can read them without getting a headache and or nauseous. Reading books is also very difficult but I have found certain colored pages and the right bright, white, cool light make it manageable. I really enjoy reading books, so it has been really important to me that I am able to make adjustments to do so. Many of my hobbies were negatively affected by this condition but I am learning to make adjustments and enjoy them the best I can. Invisible chronic illness is extremely difficult for many people to understand and even difficult for the medical community to understand how negatively it effects my day-to-day life 24/7-365. I just hope with advancing technology and more awareness better days are on the horizon. I hope I live to see the day where folks in the VSS community are able to receive treatment that at least provides some form of relief. Thanks for listening to my story!