Introducing our #WarriorOfTheWeek, Kambiz! Hear his #VSS story. ??

Spotlight on: Kambiz Roghanchi ❄️ @kambo_mambo

“My name’s Kambiz Roghanchi, I’m 19. A year ago I started having seizures & later developed “status” migraines & Hemipleigic migraines. I had to stop going to college which really depressed me. This triggered something in my brain that led to VS. The first time I noticed something off was at the train station heading to work. I saw scratches everywhere & large dots falling & rising. I didn’t care at first. I felt it was just another aura of migraines or past seizures. I took rescue meds for the migraines, nothing. My neurologist said it was VS, common in people w/ hemipleigic migraine & said it never goes away. Every morning I go outside & look at the sky hoping the snow won’t be there, it always is. One of my biggest joys is art, it’s been really hard to feel that lately. Everytime I look at a canvas it’s covered in speckles. I take medication, Anti-Epileptics mostly, for the neuro issues + rescue meds. I’ve spent almost 25 days in/out of the hospital this year. I haven’t been in the hospital for 3 months now. I’ve started to watercolor which was a big challenge for me w/ VSS. I’ve done a little but stopped since it’s difficult to paint on a white canvas converted in black dots. 

One thing that keeps me occupied is research; treatments for these rare neuro conditions specifically VSS. I spend time on PubMed & the internet. I discovered things & started treatments: Butterbur, CoQ10, magnesium, fish oil, feverfew, willow bark, & riboflavin. They work well for my migraines (severity & frequency) but no effect on VSS. I’m trying to import a med from Canada, Flunarizine, which has few but strong studies on treating VSS. I’m still struggling w/ VSS, however I keep going & slowly I’m overcoming it. My neurologist told me about this page & I was shocked to find others who suffered this awful ailment. This page is awesome & it feels so great to see others overcome VSS!”

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VSI Founder Sierra Domb and Dr. Peter Goadsby Join Tinnitus Hub Podcast

Many who have #VisualSnowSyndrome also have #Tinnitus. We collaborated with the good people at Tinnitus Hub on this podcast where #VSI Founder Sierra Domb and neurologist Dr. Peter Goadsby talk about their experiences in trying to push the envelope for #VisualSnow sufferers as well as the analogies between the two conditions.

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