Spotlight on: Dominika Skrzeczkowska

“Hello everyone. My name is Dominika (you can call me Dominique). I’m 23 years old and I have suffered from VSS almost half of my life, since I was a young teenager.

Visual Snow Syndrome…that’s how it’s called? I didn’t know back then, more than 10 years back. Before my visual & nonvisual symptoms started I suffered from great dizziness that lasted a few months. Doctors didn’t know what caused it, so they put me on SSRI’s. I believe those meds caused my VSS and current studies seem to confirm my theory. I suffered from many side effects of those drugs, including static, floaters, palinopsia and tinnitus. I tried to describe my vision to my psychiatrist. She thought it was schizophrenia and put me on psychotropic drugs. Obviously it wasn’t it. This drug caused my symptoms to worsen a lot. I was in such bad condition that I had to go to the hospital, where I was getting off all meds for 8 weeks. It was an awful, very painful process. I’ve never experienced such a huge pain in my life – physical and psychological at once.

But it worked! I was off any medications and I felt great. But my symptoms were getting worse. Currently my VSS is very severe. When I’m not focused enough my vision totally “melts”, becomes so blurry, full of static, afterimages, floaters etc. I can’t see anything. But I’m not anxious about it.

I think the most important thing while dealing with VSS is your attitude. Now I talk about my symptoms, stay positive and thankful for everyone and everything I have in my life. I consider my symptoms as challenges I need to overcome. Of course it’s not like I don’t fail sometimes – but the point is to never give up. To take care of physical and especially mental health. Remember – there is NOTHING you can’t overcome. People are amazing creatures that can adapt to every circumstance. And those circumstances don’t define who we are – we are the ones who do that. Don’t ever doubt it and stay strong, we’re in this together and we’re gonna make it.”

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“Ten years ago, in 2012, we presented work at a neurology meeting systematically describing why Visual Snow was not simply migraine aura and was a distinct disease entity. This was not received with universal acclaim, to say the least. In the intervening period, visual snow has come in from the medical ‘cold’ and is being studied actively by a number of groups on three continents. The recognition of the condition, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. I realize to the many with this often very disabling condition that it seems nothing has or is being done. Progress to treatment is never fast enough nor advances to recognition and understanding. With that said, visual snow research would be idling in a backwater where it not the Initiative. Going forward, we need to double, re-double, and re-double again our efforts for the search for effective treatments and, one day, a cure. Thank you for the Visual Snow Initiative for all you have done and continue to do.”

— Peter Goadsby, MD, PhD, DSc, Professor of Neurology, UCLA, Awarded 2021 Brain Prize

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