Hello! I live in Chicago and am 27 years old. I realized I had visual snow after many days of googling back in early 2023 after a double migraine with aura. I always say I feel like my vestibular system and vision hasn’t been the same since. For 24 years of my life I never experienced anything like this so it was quite the difficult shift. I was seeing vortexes in the sky, constant static, floaters, sparkles, dizziness, tinnitus and the list goes on. I was in such a gray area not knowing what was wrong after this migraine (I had many others in my life and this never happened) and then I came across the Visual Snow Initiative symptoms page. I felt relieved to find out there was a community of others who have experienced exactly what I do day in and day out. I joined a Visual Snow Support page and started to pay attention to and comment on posts so others didn’t feel so alone. I felt very isolated at the time of diagnosis and like no one would every really be able to see or feel what I was going through. From all the educating and research the Visual Snow Initiative does I have came to understand Visual Snow so much better and been able to educate my friends and families on it as well. It’s very comforting when new symptoms pop up and you realize someone else has also experienced that and been okay.
To cope with Visual Snow I have focused on accepting it in therapy and even though I’m not 100% there yet – my goal is to come to full acceptance with it. I have focused on getting enough sleep, taking magnesium glycinate (recommended for vestibular migraine by my neurologist), and trying to slow down as much as possible. I find Pilates to help a lot as well as walking. My visual snow increases during the times of those activities but the benefit it brings for stress relief and keeping my body healthy outweighs the negatives. I’ve tried to not let it change my life in a negative way although it can be challenging at times. The category 4 dark sunglasses saved me from the vortexes in the summer sun as well!
I am grateful I am not alone in the journey of acceptance. The research being done is incredible and I am always awaiting the next Visual Snow Initiative post, video series, etc. It’s great to feel some hope for treatment. Although it’s easier said then done – focusing on the visual snow only intensifies it. The more you can accept the anxiety around it, the easier it will become to know it’s just part of your daily life now and there’s nothing wrong with you! It’s just part of your brains processing and that’s okay.
