Visual Snow Initiative Virtual Summit 2022 

As someone with chronic migraines and VSS with seemingly every symptom under the sun, this gives me so much hope. Hang in there everyone!!

Thanks to everyone involved. It is great to know there are people working to help people with VSS.

Wow, what a big leap in our understanding of visual snow. When visual snow is fully figured out, a treatment can be developed.

Just knowing that there is a treatment out there for us is giving me so much relief.

i completely forgot about my visual snow until i saw the notification for this video 💀

I’m so grateful for this initiative! Thanks for spreading awareness and providing new hope for those with VS!

Thank you so much

Living with Visual Snow is like living in a very special kind of hell. It’s an old tv 90% in focus. It’s watching your neurons dance in your eyes. It’s constantly eluding black amoebas. It’s watching it all again in negative. It’s a deafening ring that consumes your silence. It’s a slightly tilted equilibrium that makes you lose your footing. It’s a march into emotional solitude. It’s been 12 years now. I don’t have insurance. Have hope you say? I never had it to begin with.

I've had this all my life and it's blowing my mind to see this research!

Also, fun interesting fact. I've had VSS for decades. Back in 2015 I had a stroke. For a good week after the stroke (had brain damage too) I had no VSS. But one day it came back. Thought it was interesting since they're looking at the brain like it has minor trauma. This is so fascinating.

Thank you Dr. Tsang and Dr. Shidlofsky for giving us hope and a new groundbreaking treatment protocol!

Iv been experiencing this for about a week now my anxiety is so high.

People need to spread the word!!!

Hi guys! First off thank you, its tough to describe how good it is watching VSI's work without depressing the hell out of you by going into the hopelessness of "their is nothing wrong with you / it could be early stage MS or MD / do you have a history of mental illness" and keeping a high octane career / life afloat haha, so il just say thank you! Short narrative on what i've found to work, the excellent Dr Su Wong (neuro-opthomologist) at St Thomas London diagnosed me with VSS this year and recommended these lifestyle changes; no caffeine or inflammatory foods, plenty of excersize and practicing mindfulness. Disheartened me a little to be seemed too simple, but I took it fully on onboard over the last 2 months im religiously gluten-free, inflamatory food reduced no milk 66% vegetables all meals. Theirs a book called How to feed a brain by Cavin Balastar on leaky gut, the blood brain barrier, inflamation, cytokines etc. nd how and what nutrition repairs the brain that I recommend everyone read. My overall health is better and my visual snow has objectively (as far as my subjective brain can deduce) improved (I made a very rough way to measure VD with fixed screen brightness in a dark room and duration of eye afterburn / range that Sharp edges fuzz up with static under fixed lighting / subjective day to day ). Inflamation may be linked to VSS or it may have no link and could just be overall health (I wasn't particularly unhealthy at sudden onset), I have no idea I'm no doctor... But for me a revised anti-inflamitory diet has definantely made a noticable improvment!

I started eye exercises. Its making a big difference. Thanks VSI for all you do.

Thank you for making this available to all to view

I can't wait for a doctor in the Bay Area to offer this kind of therapy. This actually gave me some hope.

I am grateful for the time the doctors invested in their research/study, and thanks to every person involved. It is not a cure but there were some promising results according to the doctors' data. Hope this is a start to something bigger. Good luck everybody , lets hope better days are coming

I never thought there was going to be hope for us until now. Thank you

2 years ago, I had a close friend who started to experience the visual snow initiative. Unfortunetely, in that time we didn't know what it was exactly, until now at this moment, we found your content and realized that the symptoms...etc are the same! Hopefully, we found your content after all, thank you ❤️

I’m glad to hear I’m not alone in this. I’ve had this life long, particularly onsetting around 4th-5th grade. I personally love the visual elements that characterize visual snow, as I can still see fairly well, and at times can “feed into” the visuals to enhance their output. The tinnitus, lifelong ADD, and anxiety symptoms I am learning to manage though, as sometimes that gets frustrating.

Thank goodness you posted this!! I missed it and wasn’t able to come because I was too busy 😔

Hope is reborn, thank you.

Thank you for this update!

Very awesome, let’s me think there is hope! My vss was induced after hallucinogenic substance use but I have since stopped. I hope this treatment worked well with post hallucinogenic substance use

Keep up the great work! Really hope we have a cure for this in the future, my life this past week has been filled with so much anxiety because of this.

Amazing summit. Good job everyone!!

This looks very promising. This is very hopeful. My visual perceptions have been affected for some years after a series of migraines with aura. Since then I am seeing a very very slightly on grid pulsating starry snow. All the thousand mini-stars pulsate synchronously. It feels a bit foggy, but I can see clearly, but for this signal noise.

Do you have a rough estimate of how long it may take for other optometrists/ophthalmologists to learn this treatment worldwide?

I'm so happy something is being done about this!

Big thumbs up and thanks for the work you have to done to create all this!

Make this available in India as well. There are lot of people with VSS in India but most doctors here are clueless about it and they completely dismiss it which makes us patients even more depressed 🙏

Thank you so much for this - AMAZING work from the doctors and from the foundation! An idea - although these exercises are best done with the doctors, I feel like some of them have the potential to be digitalized. We could have a VS website where you can go through a simplified therapy session and do the exercises online :)

Thanks for all the work, Really appreciate the help!

THANK YOU FOR POSTING THIS HERE! I wonder if this treatment would help with Alice in Wonderland Syndrome as well? I suffer from that sometimes. Him describing all the things associated with that cranial nerve, certain lobe etc; the mapping. Knowing where we are and even where our limbs are, made me think of AIWS. Thank you for all you guys do at the VSI. This is amazing. Truly. Thank you.

Imagine we only had couple hours a day of break. One day hopefully there is such a cure.

Looks promising to Help us out

Anyone here don't see dots everywhere but only on a screen or in the sky ? My doctor said that I have VSS but I don't see like the picture you've shown. I see like little stars (uncoumtable) in the sky who's moving, same on a white sheet of paper when there is a lot of light i also have a LOT of mydesopsis (floaters). I'll be glad to hear people stories.

Thank you for pioneering this study and presenting your findings.

I have visual snow since my childhood. I thought most people see the world like me. I also have tinnitus and eye floaters. Everything that doctors says there's no cure. It's so great seeing soneone studying VSS and maybe that can solve other problems too.

Any chances of doing the therapy in Europe any time soon?

These doctors would have a field day with me… I have retinitis pigmentosa and developed visual snow on top of it over the last few years starting with intense severe migraines in 2015. I was also diagnosed with autism spectrum disorder over the last 12 months. I’m telling you… They need to study me! Lol my ophthalmologist and surgeons actually said I would need a psychiatric evaluation for hallucinations. But ever since I found your channel, I know this is what’s going on… Any improvement would be wonderful, and I know I have eminent blindness due to my genetic condition, but I’m hopeful that the neurological issues can be improved.

1:00:37 she had all my symptoms, it's great knowing She's better. It gives me hope.

Please, come to Pakistan. Many people have VSS here.

I am 73 yrs old and had VS since I was a child. Glad the syndrome is now recognized. Thanks so much for the work of both doctors. I am also bothered by tinnitus. Do the VS protocols have any affect on tinnitus?

I'm a vss sufferer . I have been dealing with this for one and half year . But unfortunately i couldn't find help .i need help . Please.

Amazing!

I’ve had visual snow since I was a kid. I’m sure since at least 5 or 6. I never knew it wasn’t normal to see like this. The snow doesn’t bother me much during the day but at nigh, my eyes don’t focus, they don’t adjust to the darkness, and it’s hard to see well because that’s when I see the snow the most. At dusk and dawn is the worst, or anywhere there’s low or dim light. I can’t see. Everything becomes gray and blends together. It’s been like this I know since I started driving at 16. The after images bother me the most. As I’m typing this now, I’m in a dark room, I’m having a little trouble seeing properly because the white letters on the black background are causing a lot of after images, ghosting, double vision. I think that’s been the worst for me. I have astigmatism and nearsightedness, I’m also over 40 so my near vision focus is going. I feel like I’m not gonna be able to see if something isn’t permanently fixed. I no longer drive at night. Headlights kill me. Thanks for all the work you’re doing. I’m glad I found out about VSS and about you all! Really appreciate everything you’re doing!!

Thank you for all your work.

How is the Tsang/Shidlofsky protocol any different from visual therapy, and will the study protocol and data be released publicly?

What exactly is the therapy for VSS?

I had (and still have) VSS since I was born. How do you guys treat someone who was born with it. I noticed you guys deal with people who acquired it at some time in their lifetime, but was not born with it. I have most all those symptoms you talk about. However, since I was born with VSS I always thought that this is how you see so I was able to adjust to it easily. I have ADD and I'm on the Spectrum (formerly known as Asperger's syndrome). Yes I get the brain fog.,the headaches, tinnitus, insomnia, nausea,, body aches, and those other visual symptoms that come along with visual snow. Since I was born up untill my early 30s, all I had was the visual symptoms and insomnia. I didn't have the other symptoms. It's after I turned about 33 years old before I started accumulating the other symptoms. I'm 51 now and would like to know where I can go from here.

Thanks very much for trying to help us, thanks ...

Thanks you so much... i'm speechless. I have barely every single symtome of VSS that is possible to have and like many comrades I suffer a lot. As i writer/author its exausting to work (read, write etc), i cannot drive etc. This is my question : i'm french and i live in france. When you think the protocol will be available for french doctors that can provide us this treatment ? Thanks you again this protocol of treatment is a huge hope My best regard and all my support, Teddy

Bravo🎉🎉🎉🎉

Dope

i see static as well, but only very mild in the dark and if a look at a blank wall or sth similar is this vss?

Thank you for your research into VSS. Do you know anyone in the UK who applies this treatment protocol? Has this now been rolled out to Drs in the uk?

Thank you for this!

About 7 years ago I started experiencing what I believe was vss. Went to eye doctor who referred me to a retina Dr, they both stated my vision was great when corrected with glasses since I have miopía and agtimatismus. But this is the problem, I have the static, flickering either my eye is open or close then I have a total temporary visual lost that last 1-15 minutes more often every year in my only working eye. I lost vision on my left eye when I was 2 years old so the right eye is the only eye I relay to do my daily chores. My question is this therapy for me? I was told may I have amaurosis fugax. Please advise!

I hope to be treated one day

Great job everyone! Do you know anyone in Europe who applies this treatment protocol?

I’ve been dealing with this with pretty severe symptoms for over 5 years now, it feels debilitating at times.. I hope there will be some solutions.

Things I've gathered that are possibly correlated with VSS. Anxiety, hyper alert people, hyper analytical people, depersonalization, mental trauma, head trauma, fast metabolisms, forms of autism, auto immune conditions, dietary intolerances, bad drug trip induced (high anxiety event). Also seems to onset for most around early teen years. Or possibly has always been there for these people this maybe around the age they simply become self aware of the condition. Once you become aware you can't unsee.

Hi sorry for being late to this but is there gonna be another summit in 2023?

Please share the treatment or i will die 😭😭 please help my symptoms are really bad i see floater and constant light flashes with whole field of vision is filled with static.. extremely sensitive to bright light ..and have a very high tinnitus in mostly right sideear..

Please dont give up

I also recently started having all this symptoms and my life is getting bad day by day ,, please help 😭🙏

Please someone help me summarize

I have had visual snow my entire life. It has however gotten worse since I had covid.

Does this say how many people were in this study?

# vss initative ke saste nashe. It means keep it up vss initative

Maybe they answered and I missed but is it normal for vs patients to have disfunctional saccades?

Tut is great there is a treatment but I live in Hawaii so far away from the mainland.. I wish I could go do that treatment but for 12 weeks? Idk how I would do that I’m not rich

what is the email address for the doctors to email? I cant find it

I wish that i had VSS instead of HPPD, because there's atleast some research going on about VSS.

what time stamp he explains how to cure it?>

what should i do if i live in japan?

When will the treatment be published?

is there any treatment in Malaysia? i hate the floaters and tinnitus

How can I get access to this treatment as someone who lives in Hawaii?

is there any way to get this treatment in germany right now? or even europe ?

Visual snow has ruined my life please 🙏 help me

Am I the only weirdo who is not bothered by my VS?

It took me a lot of time to know what m dealing with

How can we avail of this treatment?

Will desensitizing the eyes with a wide field with film grain help with this condition? ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-vXTObQM4ogs.html

my snow is getting worse :(

Kelsey's symptoms are consistent with histamine intolerance.