VSS is impacting my life greatly for 13 years now. Thank you so much for all your hard work. Would be amazing if we could find a cure, or at least some relief. Thanks ❤
Thanks for doing so much for other people dealing with this situation. Just knowing theirs an organization out their working to bring awareness to and studying VS brings a lot of relief and comfort to those dealing with the condition. At least it has done for me. Thanks so much for putting such effort in to create this!
Thank you so much for your kind words regarding our diligence and passion! 🩵 We are happy our progress makes you feel this way and greatly appreciate the support. 😊
My VSS started April 2022 and I have MS so having these 2 neurological conditions is a nightmare 🙈 Life is so difficult 😔🎗️👀 Thank you Sierra for this platform and keeping your efforts alive 🙏 I am in South Africa and MS is hardly understood nevermind VSS, I don't even bother mentioning it anymore, nobody in the medical field here knows what the hell I'm talking about, I have yet to meet someone who has insight most just brush me off when I 🎉try to talk about it, it's sad 😢🇿🇦 But me being me I will mention it again if I see someone new which I actually hopefully do next Jan just to see if anything has reached here yet 🙏
Thanks for all your efforts; still to this day I have just had to learn to live with this stupid & annoying condition. My night vision has got so bad now and its just such a shame however its very nice to come back to this and see other people with the exact same struggle. I remember when it started around the time I was 18 years old and the panic that caused, never getting an answer from health care providers. Now I accept it for what it is but sometimes it really does get me down and I wonder why it never went away. I appriciate your hard work!
You are doing important work. We need to keep going with research and awareness of VSS. I have brought this syndrome to the attention of many of my medical colleagues.
This is the first time I learned about VSS. Thank you so much for the GREAT education! Questions: Are there risk factors, such as gut dysbiosis? Has the prevalence recently gone up? If so, where can I find a graph to correlate events with the rise (if applicable?) In the Interim: I do have recipes of vegan smoothies that might help. Let me know your interest... if I should post in the comments or send an email. One was designed to increase GABA, another was designed to improve sleep, and another designed to reduce stress without adding drowsiness. The smoothies are low oxalate (for those with low stomach acid or kidney stones) and they use natural ingredients (real foods).
Buenas tardes, desde España. Muchas gracias por el video, estoy muy agradecido y saber que von el tiempo podremos curar la nieve visual, me hace muy feliz! Me llamo Salvador, un beso desde España!
65 years old. Wasn't until the last decade that I realized I am not going blind or have a brain tumor. I was scared to death as a kid. I resigned to a dread of future blindness in the cards. The darkness was the worst. Whirling solar storm and ringing ears. The scariest symptom was losing touch with my identity and losing track of where and who I was. Brief spells that lasted 90 seconds to 2 minutes. I still have all the symptoms. In my case I can honesty say the symptoms persist, but depersonalization is much more rare. I wish I had known about VSS when i was much younger. No question not knowing what was wrong with me left me feeling hopeless and I didn't put much effort into preparing for the future. Why bother?, I thought, I will eventually be blind anyway. ❤
Thank you for your support and question! For public safety and legal reasons, researchers are unable to disclose any specific drug(s) that may be used in the study. Once efficacy and safety are confirmed under strict medical supervision, results will be published thereafter. Currently, this study in Switzerland is still in the internal review board phase. Once approved, we will provide information on study recruitment for anyone interested via our website, newsletter, and social media. Thank you for understanding.
This was really interesting, I love the MBCT i think it could also help too. Like Dr Owen said its not possible to change the hard wiring but the software it's possible.
Absolutely, and thank you for the support! 🩵 Dr. White’s insights/analogies explain MBCT, Visual Snow Syndrome (VSS), and Dr. Wong’s research very well. We are glad to hear you also found them interesting and look forward to sharing more as we work to make MBCT for VSS globally-accessible, so that everyone with VSS in the world who would like to try it can have the opportunity.
A very common symptom along with visual snow is myodesopsias or floaters... Can someone explain to me what the relationship is? Visual snow is something from the central nervous system but floaters are something physical from the vitreous that comes off.
Can anyone please help me I had a migraine aura 1.5 years ago and i still have it It happens 2-3 times in a month But recently (like 2 months ago) when I woke up i saw static vision but it went away few minutes after I had this same thing 2-3 time since then when i woke up but fortunately it goes away After that when i looked at the sky, the walls, the ceiling, white things and in the dark i saw this static vision I don't see static continuously just in these cases what i mentioned above I see everything normal and crystal clear So is this related to migrate aura or i have VSS I have tinnitus too Thank you!
Hi there, the medication study in Switzerland is in the internal review board phase. Once approved, the researchers will provide us with volunteer information, and we can share it via our website, newsletter, and social media thereafter.
