Today's update is going to be a brief "review" of a few important points on our quest to find a treatment into visual snow.
I'm going to attach a video that I included at the beginning of our campaign, with Prof. Goadsby. It is a little "outdated" because it took place before the visual snow study results were released, but I think it helps to put a face and voice to this research. To show that we have a small team of educated and capable researchers behind this study.
Jen's update - My personal condition is still not good. It's pretty horrible. My symptoms keep coming at me fast and furious. I'm still trying to deal with symptoms that I developed in June and new ones keep coming, so no time to adjust or even try to adapt to much. I get asked a lot what are the most difficult symtpoms. It's sometimes hard to say. I've been having a lot of trouble coping with the ear pressure and tinnitus. The visuals were bad enough, but dealing with the ears too now is more than a person should have to cope with 24/7. The trails are hard too. Everything that moves in my vision has a trail behind it. I'm going to try to include an image of a hand with this update to give you an idea of what I see with motion. My static is much worse than it use to be, but controlable. My floaters are worse, and I've suffered with these for almost a decade, so the fact that there are more is terrible. My afterimages come pretty fast after anything that is high contrast or lite. Glare, ghosting, starbursting, halos are all the worst they have ever been. I wear my sunglasses a lot, even in my house with the curtains drawn. BFEP is bad too, not only in the sky, but any bright surface. I still don't even attempt to drive at night. I haven't since July. It makes it hard now that it is getting darker earlier because the kids have so many activities. As for the kids, if you see me, which few people do anymore, it is almost 100% because of my children. I push through daily for them. It's not because I'm better, it's the opposite, it's because I'm not. I can do much less now then I could in June, so I have no idea what that means for the future at this point. Anything that I can even mildly tolerate I try for the kids, but it's almost all things at home, like helping with homework. I haven't even been to a restaurant since June, and for those who know me well, know that I use to enjoy eating out several nights a week with friends and family. I will continue to push through and "survive" each day for my kids, but mourn all of the things like we no longer do like days at Disney, family vacations and just playing outside.
As we come closer to reaching our initial $50,000 goal, I feel like it is more important than ever that we have enough patients submit their information to the doctors for the next study. I don't know much information yet, but I do know that they are hoping to have two locations, possibly three. The likely locations would be California (USA), London (England) and Munich (Germany). Even if you submit your information, are contacted, and then change your mind, at least we will have a good pool of patients to start with for the doctors. If they have to waste their research time tracking down potential patients, that will be very disappointing. Let make this process as easy as possible, so we can get the study underway and get the results - A TREATMENT, that we all want.
If you suffer from visual snow syndrome and are interested in participating in the next study, please email Prof, Goadsby and Dr. Schankin at VS-Research@headache.ucsf.edu with the following information. If you already sent a brief "I'm interested" email, please RESEND with this information. Thank you so much!
Date of Birth (Day/Month/Year)
1) Please make a brief statement that you are willing to be contacted for research. This is a European data protection issue.
"Yes, please keep my contact details and you may contact me for research purposes."
2) Brief description of all symptoms you relate to visual snow syndrome.
3) Short description of visual symptoms in own words:
4) Visual snow: what type (chose one):
- black and white (i.e. only black dots on white background, white dots on black background)
- clear (i.e. color of the background)
- flashing (i.e. always white, brighter than background)
- all of these
5) Other symptoms (please only answer yes or no)
- After images
- Trailing of images in the vision
- Blue field entoptic phenomenon (i.e. white squiggly lines moving pulsating on the blue sky)
- Floaters in vision
- Colored clouds or waves with eyes closed
- Flashes of light
- Impaired night vision
- Sensitive to light
Prof. Goadsby interview on visual snow
Trails from motion