Depersonalization is by far the worst symptom in my life. I picture a life I want but I'm trapped in a foggy bubble that I can't break free of. Thank you Sierra Domb for everything you are doing. You really have given me hope for the future.
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 🙏
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 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.
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!
I believe this organization should have a section in Spanish. Considering the global impact of this disease, providing information in Spanish would help reach millions of Spanish-speaking individuals who may be affected or interested in the research. It would also demonstrate a commitment to inclusivity and global awareness, ensuring that vital information about prevention, treatment, and advancements is accessible to a broader audience.
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).
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. ❤
You're the first person that has mentioned a whirling solar storm. I don't really see static but circular whirling strands. I'm 37 years old and have had the whirls since I could remember. I know what you mean when you say you're losing touch with your identity. As if you picture a life you want but you can't reach it because of the depersonalization. The spells come and go. I feel as if I'm in a foogy cloud every second of my life. I also feel hopeless. But knowing other people are going through the same thing gives me a sense of hope knowing were in it together.
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.
floaters are the shadows proteins or cell debris projected onto the retina. many people without VSS can see them, just like the blue field entoptic phenomenon; VSS often makes existing visual phenomena much more noticeable which is why i think floaters are such a common symptom.
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.
Mine happened after a bad trip from eating too many edibles. Had severe dpdr and although that's gone, I still have vss, not as bad as it originally was though, so it seems this is doable.
I get glutamate excitotoxicity every few years. Ever single time after that I get VSS. So 100% there is a direct correlation between high glutamate levels and low serotonin, GABA, and dopamine. In my case high levels of glutamate inflame my occular nerve and VSS continues until my inhibitory neurotransmitter levels get back in balance. I've used memantine and NAC to help with the severity (this limits and reduced glutamate) IMO high glutamate is the cause of VSS. It is the bodies main excitotory NT. High levels cause neuro inflammation and lower inhibitory NTs. Very high levels cause cell and nerve damage to dendrites, mitochondria, transporters, and continued high levels then can result in cell and nerve death. In these cases I'd like to see studies on BDNF and NGF on if those can spur neurogennesis and result in eventual replacement of new neurons and the elimination of VSS.
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.
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!
I personally think VSS and migraine aura's are related. I do think with time the brain learns to adapt to the migraines and will lessen over time. That's just my opinion though. I have had migraine with aura's less and less as I'm getting older. Maybe 1-2 a year. But man do they take it out of you when they happen lol. I was prescribed Sumatriptan for a onset of a migraine to help with migraine aura. I hope the info helps.
Thanks so much, Sierra. Puledda is a VSS rockstar researcher. We need to keep supporting her work.
Depersonalization is by far the worst symptom in my life. I picture a life I want but I'm trapped in a foggy bubble that I can't break free of. Thank you Sierra Domb for everything you are doing. You really have given me hope for the future.
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 🙏
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 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!
My son has a VSS. I hope a cure will be found🙏. We are from Europe.
My daughter and nephew and I have it. Definitely runs in family.
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.
Thank you ❤
These are so important. Youre such a gem 💎
Thank you so much for the work you're doing!
thank you for all the work you have done :} sending love and prayings from Mexico all glory to our lord and saviour Jesus Christ amen :)
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!
¡Salvador, muchas gracias por el apoyo! Nos alegra mucho que nuestros esfuerzos estén teniendo un impacto positivo. 😊
Thank you very much🖐
Thank you for all your hard work, Sierra.
You are so welcome! Thank you for the support. 🩵
I believe this organization should have a section in Spanish. Considering the global impact of this disease, providing information in Spanish would help reach millions of Spanish-speaking individuals who may be affected or interested in the research. It would also demonstrate a commitment to inclusivity and global awareness, ensuring that vital information about prevention, treatment, and advancements is accessible to a broader audience.
So great! Thank you so much, you are my hope!!
Thank you! We greatly appreciate your support and are glad to hear our progress instills hope. 🩵
I have VSI
my daughter and nephew. Definitely runs in family.
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).
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. ❤
My daughter when one day showed me on her phone that this is the way she sees the world. I couldn’t believe it. I have it too! Finally a name.
You're the first person that has mentioned a whirling solar storm. I don't really see static but circular whirling strands. I'm 37 years old and have had the whirls since I could remember. I know what you mean when you say you're losing touch with your identity. As if you picture a life you want but you can't reach it because of the depersonalization. The spells come and go. I feel as if I'm in a foogy cloud every second of my life. I also feel hopeless. But knowing other people are going through the same thing gives me a sense of hope knowing were in it together.
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.
floaters are the shadows proteins or cell debris projected onto the retina. many people without VSS can see them, just like the blue field entoptic phenomenon; VSS often makes existing visual phenomena much more noticeable which is why i think floaters are such a common symptom.
Great work from VSI, as always. Do we know what pharmacological intervention is being used for the upcoming study? I'm very eager to know what it is.
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.
@@VisualSnowInitiative Thank you! I'm excited to see the results of the trial in 2025!
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.
@@VisualSnowInitiative Thank you all very much for what you are doing. Is there a time frame you think the MBCT will be available for us to try?
Mine happened after a bad trip from eating too many edibles.
Had severe dpdr and although that's gone, I still have vss, not as bad as it originally was though, so it seems this is doable.
My eye doctor told me VSS doesnt exist but yet suggested glaucoma. I should send him this video 🙄. Anyways ty ❤
Do you loss? Your peripheral vision? Please tell me
@@syedalaibahassan no you dont lose your vision with VSS. Idk about glaucoma
Glaucoma is pressure in the eye. VSI doesn't have this.
I get glutamate excitotoxicity every few years. Ever single time after that I get VSS. So 100% there is a direct correlation between high glutamate levels and low serotonin, GABA, and dopamine. In my case high levels of glutamate inflame my occular nerve and VSS continues until my inhibitory neurotransmitter levels get back in balance. I've used memantine and NAC to help with the severity (this limits and reduced glutamate) IMO high glutamate is the cause of VSS. It is the bodies main excitotory NT. High levels cause neuro inflammation and lower inhibitory NTs. Very high levels cause cell and nerve damage to dendrites, mitochondria, transporters, and continued high levels then can result in cell and nerve death. In these cases I'd like to see studies on BDNF and NGF on if those can spur neurogennesis and result in eventual replacement of new neurons and the elimination of VSS.
can i apply for the trials i have hppd but vss took over and hppd went away
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.
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!
I personally think VSS and migraine aura's are related. I do think with time the brain learns to adapt to the migraines and will lessen over time. That's just my opinion though. I have had migraine with aura's less and less as I'm getting older. Maybe 1-2 a year. But man do they take it out of you when they happen lol. I was prescribed Sumatriptan for a onset of a migraine to help with migraine aura. I hope the info helps.
@@AverageMitch1987 thanks buddy
I just wish I could watch the clouds pass. When I look at the sky its like a bright static screen that makes me want to vomit.
Anyone indian
Yes m