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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New Visual Snow Syndrome Study!

The VSI has been working with Dr. Tsang in California and Dr. Shidlofsky in Texas. Both doctors have been highly successful in reducing, and in some cases, eliminating symptoms of Visual Snow Syndrome in their patients. When we learned that their philosophies and methods were strikingly similar and effective, the VSI put them in contact with each other. They are now collaborating on an enhanced VSS protocol. They will be accepting new patients for this study.

Today, the VSI will be releasing a series of informational videos on our YouTube channel in which Dr. Tsang and Dr. Shidlofsky discuss their experience in treating VSS. The VSI will also post video testimonials from their patients. We are enthusiastic and optimistic to share Dr. Tsang’s and Dr. Shidlofsky’s insights with the VSS community. If you would like to make an appointment with either Dr. Tsang or Dr. Shidlofsky, their contact information will appear at the end of each video. Watch the videos here: http://bit.ly/VSIYouTube.

We recognize that the majority of people with VSS cannot travel to California or Texas to take part in this study. Therefore, once the study has concluded, Dr. Tsang and Dr. Shidlofsky have agreed to make a series of instructional videos that will show their step-by-step protocol, which can be done at home. They will offer suggestions and techniques that will allow the use of household items versus in-office medical equipment. The VSI will also make these videos available.

We would like to thank Dr. Tsang, Dr. Shidlofsky, Kelsey NaPier, and Michael Neustifter for their kind and generous contribution to the VSS community.

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