Hi! My name is Ava Baker, I am a 19 years old and from Orange County, California. I am currently a second year undergraduate at the University of California, Santa Barbara, majoring in microbiology. I’ve had VSS throughout all of my life, but just recently was diagnosed this past March 2024. It’s been interesting learning about all of the symptoms I have that are tied to VSS, since I thought everything was normal.
I would say my earliest memory of being aware of it is when I was in elementary school, and I thought that the static in my vision was just the molecules in the air. In addition, I would notice that if I stared at my teacher for a few seconds without blinking and then looked away, I could see an after-image of them. I remember as I got older, I noticed my vision at night was much worse, I would see the “ghosting” palinopsia, and I was much more sensitive to brightness. I thought that all of these visual symptoms were just because I have very poor vision- I had to get glasses as early as 3rd or 4th grade, and my vision has been getting worse ever since.
Throughout middle and high school, I noticed tinnitus, floaters, and headaches very frequently. Thankfully, I don’t get migraines (I’ve only had a couple), but I do get headaches that vary in intensity and frequency. I also noticed my anxiety to get worse, but again, I thought that all of this was normal and just part of being human! I would mention some symptoms to my parents, but they would assure me that everything is fine.
However, sometime in my sophomore or junior year of high school, I was scrolling on TikTok, and a TikToker popped up who had a list of “rare disorders/diseases”. One of them was visual snow, and I remember being in awe about how the static in my vision was actually not normal. I told my parents about it and tried to do research on it, but there was little to nothing about VSS. So, I went through high school until this past year when I had my first year of college. Somehow, my horrible vision came up in conversation and I mentioned VSS. I said that I’m pretty sure I have it, but there isn’t many people who know about it since it’s so rare. Then, I decided to research it again, and there was much more information than a few years ago. I thought that since there’s more studies being done, maybe I could get diagnosed.
So, I first went to an optometrist and explained purely my visual symptoms since I didn’t know the disorder affected different areas. They then referred me to an ophthalmologist, who I got to see in December 2023. He did all of the same testing from the optometrist plus dilated my eyes for the first time. He couldn’t find anything out of the ordinary, but told me that I’d need to come back every year to dilate my eyes since my vision is so bad (I literally have the eyes of a 65-year-old). He referred me to a retinologist who would be the last person to see if anything is wrong with my eyes.
Then, in March 2024, I saw the retinologist. The office completed the same tests as before, and didn’t see anything concerning pop up. I remember him asking me why I was there, and I mentioned VSS. He looked at me so confused, and had never even heard of it before. This has happened for every doctor I’ve seen, so I explained my story of finding out about it on TikTok. He went on to say that I shouldn’t believe things I see on the Internet, especially TikTok. I was confused since I knew that VSS is very real, and told him to look it up. He ordered one more test- the fluorescein eye stain test… look it up to see what it is.
Well, I fainted from the test and woke up on the ground, with nurses and my doctor kneeling over me. The first thing my doctor says is: “Well I looked up the disorder and it’s real! And super rare!”. Thanks, Doc. After I got situated, my results came back normal. My doctor asked me about the other symptoms (anxiety, tinnitus, etc.) and I have all of them except migraines. He then diagnosed me and explained there wasn’t anything else he could do since there is no known medication or treatment.
Since then, I’ve been in therapy to manage my anxiety and chronic PTSD, but it’s been hard to manage whether VSS affects certain situations or my PTSD. However, after seeing how much more awareness, research, and community around VSS there is now rather than a few years ago, I am so hopeful for the future! I hope my story teaches others to never give up in figuring out what’s wrong with your mind or body. You know yourself best, and you are valid. If you ever want someone to talk to, I’m always here 🙂 My instagram is bava.baker.
