Hey! My name is Mykola, I am 21 years old, and I am Ukrainian.
I have been suffering from Visual Snow Syndrome (VSS) for the past eight years. My symptoms include static vision, blue field entoptic phenomenon, eye floaters, photophobia/light sensitivity, starbursts, halo effect, nyctalopia (night blindness), pulsating vision, and the so-called “Purkinje Tree,” which involves seeing the retinal blood vessels in my own eye. Additionally, I have many non-visual symptoms.
I don’t recall exactly how it all began, but it appears that after a severe case of tonsillitis that led to hospitalization, I started perceiving the world differently. I began seeing the world in different colors; everything looked more grey, like a broken TV. Soon after, I noticed various visual phenomena, the terms for which I didn’t know at that time. I was scared to tell anyone about my symptoms. I was scared I was going blind. After experiencing a really bad visual aura when I was around 14 years old, I immediately rushed to the ophthalmologist, who asserted that my eyes were perfectly healthy. Despite seeking opinions from various doctors, including neurologists, and undergoing numerous examinations to find the cause, they all dismissed my concerns, gaslighting me and claiming it couldn’t be true.
I’m currently pursuing a Master’s in Neuropsychology, and I’m grateful to the Visual Snow Initiative for raising awareness and spreading knowledge about VSS.
I would recommend everyone with VSS to find a doctor who specializes in Visual Snow Syndrome diagnosis, as I did, thanks to the Visual Snow Initiative. They can provide a diagnosis and help you deal with it. Additionally, it’s crucial to take care of your mental and physical health. I lead a disciplined life, eating healthy, working out daily, and exposing myself to cold environments and conditions, which certainly helps me in my journey.
