Video: Why I wore a TV on my head

There I am, walking around downtown with an actual TV on my head. Do you see the window faces? What on earth compelled me to embarrass my husband in this way? It’s quite simple really. I’ve got a rare condition that doctors don’t know about. There is no treatment and rarely anyone to turn to. The physical and mental 24/hr burden looks exactly like living life with a giant tube on my head. (psst: and I love to torture my hubby)

Please take a moment to watch and share this video. Doctors who haven’t read the latest research articles on Visual Snow Syndrome are unaware that this condition even exists. Instead, they misdiagnose patients with a long-term migraine… or even refer people to a shrink. All joking aside folks, this is real. Help us spread the knowledge. Someone you love may be affected and perhaps too embarrassed to talk about it. If a doctor thinks you’re crazy, then what will everyone else think? I was there.

The simulations you see from my perspective may or may not come through on your screen the way we VS’ers (ha!) truly see things. To give you the rundown, we see tv-static covering over everything in our visual field 24/7. Yep. 24/7. On top of that we will usually also see any number of these fun disturbances at an exaggerated level: afterimages (we look at something for a second, look away, and still see the negative image of the thing we just saw. This can be especially difficult when reading, as we tend to still see the line of text we just read on top of the next line. Or watching TV, as we still see the image from a moment before now laying on top of the new one. This one symptom of Visual Snow can be more handicapping than the “snow” itself), trailing of moving objects, Blue Field Entoptic Phenomenon (exaggerated), floaters (everywhere), and MORE… to truly create a buzzing-static-vision filled with negative images, flashes, trails, wiggles, dots, spinning circles, and craziness… 24/7.

Certifiably nuts? Think again. There is a location in the brain responsible for all of this mayhem (the Lingual Gyrus to be exact) and doctors are trying to figure out how to treat it. So we hang tight. And try to live in hope. And try to get the word out. And work to raise funds for the next phase of research. Will you join us?

If you’d like to read my personal story of Visual Snow, see my previous post here.

If you’d like to donate (seriously, every single dollar is one step closer to research – no admin or CEO paychecks here – a direct impact!) follow us to Go Fund Me here.

If you’d like to learn more about Visual Snow Syndrome, join our forum discussions, see the research papers, find out more about the Eye On Vision Foundation, and more, go here. <–handy hubby made this just for you and me!!

Thank you for taking the time to educate yourself on a rare and overlooked condition. Your prayers, your support, your donations… mean everything to us.

-Jackie Vest

Visual Snow Syndrome
Visual Snow Syndrome

Comments

  1. Jeff says:

    I also live in NC, Charlotte metro area. I hate going to doctors, and they look at you like you’re on drugs. Nobody I’ve ever talked to has heard anything about it. Except now, with VS forum on FB.

Leave a Reply

Your email address will not be published. Required fields are marked *