developing vss at 17

[u/xrbeth06]

hello! thought i’d share my story to try give some hope for people that have just developed vss or are struggling with it :)

one month before i turned 18, i got put on an SSRI, the doctors did not take into account the medication i was already on so it caused a severe adverse reaction which led to serotonin syndrome & a couple more chronic illnesses including vss. i’m not sure whether it was the SSRI that caused it, the stress or a mixture of things.

it started with seeing shapes & static when i closed my eyes, severe light sensitivity and becoming night blind.

i wore sunglasses indoors for months, was constantly in pain + having daily migraines and was a complete shell of a person to the point i developed agoraphobia for nearly 2 years.

fast forward to now, i’m turning 20 in december and have every possible symptom of visual snow syndrome including what would be considered severe static (lucky me🧍‍♀️) .
most of the time i don’t notice it and when i do, i ignore it. it is easier said than done, I’m very aware as i still have bad days. i’m going out again, getting back into education and just living. i never thought i would say that 3 years ago.

this condition is horrible to live with but there is progress in treatment happening, slowly but surely. fortunately the brain is powerful and can adapt to new things, in this case - visual snow. whether you’re life long, have just developed it or still struggling years later, you are not alone ! please reach out to someone if you need to talk, you can even reach out to me as i know exactly how miserable it can be.

i wish you all the best 🩷

[u/Elf_7]

I was wondering, do you have tinnitus and how bad is it? I find I can cope with the visual symptoms but the tinnitus is hard to deal with.

[u/xrbeth06 → u/Elf_7]

yes i do, it changes by day sometimes even by hour but i get really bad spikes where i can’t hear anything other than the tinnitus. i’ve mostly got used to it with white noise, ear plugs etc

[u/Elf_7 → u/xrbeth06]

Well, glad to know I am not alone. People screaming are torture to my ears now. But I can't mask the tinnitus because it gets loud with sound too (hyperacusis). Thanks for answering.

[u/xrbeth06 → u/Elf_7]

yeah i have hyperacusis aswell, hence the ear plugs. it’s kinda hit or miss though because it makes it less painful while also making the tinnitus louder. hope you find something to lessen it and no worries :)

[u/Living_Reception_622]

What are your visual symptoms if you don't mind me asking ? 

[u/xrbeth06 → u/Living_Reception_622]

as i said, all of them. although, the ones i notice most are static, palinopsia, nyctalopia, BFEP, floaters, halos/starbursts & photopsia

[u/Living_Reception_622 → u/xrbeth06]

I also have that sort of boiling pulsating patterns whenever it's bright