After 8 years of searching for a name, someone else with my suffering, only yesterday did I finally find it. Made me almost tear, relieved that i'm not the only one, so happy to see people are coming together to try solve and fix this
I can’t believe this... all these years i’ve been trying to find out what was wrong with me. I felt so helpless and powerless over this, we need to spread awareness so that people know about it.
I’ve had VS my whole life and would love to get involved or get tests done to help for scientific research. No one has ever taken me seriously to the point I don’t bother bringing it up anymore as they just tell me I’m imagining it.
Hello Emily, we know you're not imagining it, we know it's real. We're working hard to educate the medical community and the world that VS is real. Please email me to discuss your involvement at steven@visualsnowinitiative.org.
I know this very well, that I am only immaginating this, but now we have the proove that it is not any illusion we have. I am happy how many people now is engaged to find some cure for our disorder.
I've educated my doctors. And they've kept my information. I've had no migraines since wearing my irlen glasses 😊 so yes, educating doctors does work!!
Finally this answered my questions. It got to a point that i thought im having a very deadly disease that I don’t know because I feel weird because of seeing things with my vision. I can’t concentrate thinking about it. But now i’m happy that finally I somehow know whats going on because i really am stressed and anxious for the past month. It is very difficult waking up and felt weird, my vision is somehow blurred and grainy that it made me fell gloomy. Hope my symptoms get better! Thank you for this video!
Thank you Jm for sharing your story. We're sorry to hear that you have VS symptoms but we're happy to hear that our videos have giving you some clarity. Please keep us posted, thank you. If you would be so kind, we'd love a 5 Star Facebook review if you're on FB.
Visual Snow Initiative yes off coarse :) this video really help me a lot in somehow assuring me that what i am experiencing is true and it made feel better. Knowledge is really power and spreading the word is important specially for those people who don’t have means to search the internet or to contact a medical professional and educate themselves. I am a healthcare professional and health teaching is really important. I am sure that i am not the only person here in the Philippines that suffer from VS symptoms. How sad and terrifying it could be for those who don’t know they have VS, id know cause i have felt the-same but being informed that i am not alone gives me hope and positivity. Thanks a lot and hope many more research about VS in the future :)
Thank you for the work that you do on this topic. It's heart-wrenching to see your healthy 15 year old brought to tears from this condition. Glad it's been recognized and that there's some glimmer of hope for the future...
Dr. Yasser, that was a fantastic talk. I had no clue this is a condition but am so glad I learned about it so that I can pass it along to people that may be suffering.
The fact that visual snow isn’t normal is just mind blowing to me! I can’t remember a time without it. The thought of looking a a wall and _not_ seeing hundreds of tiny dots is unimaginable lol Mine isn’t bad enough to be impairing for most of daily life (as far as I’m aware, I suppose I’m not the best judge haha) but it’s still annoying.
Thanks for sharing Gemma. Hopefully you have joined a Facebook support group and are now part of a large community. Here's the link to a couple of good groups: facebook.com/groups/VisualSnowInitiativeDiscussionGroup & facebook.com/groups/visualsnowsupport.
Gracias por compartir, nos complace saber que ha aprendido a vivir con VS. Estamos aquí para usted si necesita asistencia o más información, visite nuestro sitio web en www.visualsnowinitiative.org. Gracias.
Obrigado. Esperamos poder fornecer-lhe boas informações. Você pode encontrar mais informações em nosso site em www.visualsnowinitiative.org. Obrigado por compartilhar.
i love how you put this to words i been dealing with this for many years i am almost 50 now! but as of late i know have Postural orthostatic tachycardia syndrome on top of visual snow! im not sure if the two are linked but i have watched all the youtubes on the thalamus i now have low bp and low body temp and now pretty much couch bound do to POTS Visual Snow i could deal with but the POTS not so much as when i stand my heart rate goes from 70-130 just by standing.. I was one that has been on the facebook support groups since it started with eye on vision foundation.. Kinda odd now even Postural orthostatic tachycardia syndrome gets pushed under the rug as well we go to the ER first thing Doctors think is "dehydration" so they give us fluids and send us home just to go back in and have the same thing done over again so i hope you might take a look in the links of these two syndromes! God bless you and have a great day!
@@candiceisthename sorry to hear that having it happen at such a young age! VS i got use to as time went on but POTS as put me to my knee's! Sad thing is nothings is known about POTS but imo i pretty sure VS and POTS are linked they all talk about the Thalamus well the Thalamus control everything! I hope u can get help with your young one and god bless :)
I've had the Visual Snow Fuss since I was young but it wasn't there during the day and barely effected my night vision. I took Zoloft for 5 days because I was bummed out over a surgery and now I have developed every symptom including tinnitus. My Father also has it and tinnitus but to a lesser degree. I'm glad at least some people are looking into it. This honestly is going to be the death of me if it doesn't get better. I never stared at the sun, or blasted my ears but I still get fucked by life...
Please stay strong Robert. We know what you are going through and understand how difficult it can be. Please know that we're working hard on treatments that could help you reduce your symptoms and ultimately we're seeking a cure. Please email steven@visualsnowinitiative.org if you'd like to be a participant in an upcoming trial. Take care of yourself.
I just figured out I have visual snow, even though I can see rather a cleary durn the day I am starting to notice more static on walls etc I am still able to see in the dark to an extent but there is so much flickering snow like fine dust you see around the edge of a galaxy, I'm very anxious that it will get worse or will it stay the same? Can anxiety make it worse or maybe I'm noticing more because I'm focusing on it not sure When people get it does start developing slowly or quickly does it take a month or a few months for the full onset of symptoms or is it a sudden onset and that's what you're stuck with?
@@furqanahmed5221 to this degree about 3 months! something was up with my vision back in January, but ive always seen some tiny bit of static in the dark
I could never see the white board at school 😢 only recently last two years I found irlen 😦 😢😢😢😢 but i have my lenses tinted by specsavers. Doesn't solve my visual snow though.
I can reassure that it has a close relation to tinnitus and depersonalisation I got all three. Smoking weed was a trigger to make everything worse but I'm sure all three were already part of me. I could force the feeling of derealisation by over thinking life since I was younger. Now I get feelings of derealisation mostly by not even wanting to think about it. Tinnitus came later than the visual snow.
Thank you Juan for sharing. We know it's tough but you're not alone. We're working hard to create more awareness and get the funding necessary to find a cure. Stay strong Juan and please try your best to relax as your anxiety can just make your symptoms worst.
I remember when I was 6 or 7 years old and suddenly noticing that the world looked fuzzy in a way. Even with corrective lenses, the world looked like I was watching an analog television. I would see dots of light, floating shapes and I'd see shades of color in the dark. As I got older, I developed light sensitivity as a teenager, tinnitus and then migraines in my mid twenties. I never brought up the vision issues because I had no idea that it wasn't normal. It was only during a random conversation with my chiropractor that we stumbled on the topic of visual snow syndrome and I realized, oh wow, this is real? This isn't normal? I have been on medications to control my migraines for over a year now and just recently I bought new glasses with a blue light filter tint to the lenses to help with my photophobia. To my astonishment, it actually dimmed some of the visual snow that I've always had. It's still there but easier to ignore now than before. So now, I'm considering looking into studies of the syndrome to try and help with the research process. I've been dealing with this for my whole life but, if I could, I'd like to help with making it easier on others who may have trouble adjusting to it.
Am I the only one who can form images and patterns out of the static? I often can see geometrical patterns within the dots and I can consciously change the shapes and move them around my visual field. I can’t find anyone else who has this:/
Hi there, Thank you for sharing ! Absolutely, depersonalization is also a common non-visual symptom of VSS. Feel free to check our Diagnostic Criteria for more symptom information.
Hi there, Thank you for sharing your suggestion! We hope to bring awareness to Visual Snow Syndrome all around the world! Stay tuned for any updates on VSS in Pakistan!
Hi Mert, I also had the most problems in the dark with visual snow, which is very bothering. But I have been able to ignore this after years and I hope it will also be so for you, better was they find a cure first.
Hello there, how are you today? We will need participants for an upcoming trial on a treatment that has showing some good early signs. If you are interested to learn more, please email your request to participate to steven@visualsnowinitiative.org. I'll look for your email.
I have vs ....almost a year....with brain fog...when i say brain fog i mean i feel like i am dreaming ....a very strange situation...like i have drink 2 glasses of whisky...... i am like this all the time i sleep like this i wake like this scares me a lot.....i dont have problem of concentrate im normal in this....i believe that my brain fog is not a "typical" brain fog😥😥😥 Has anyone has the same situation like me?? I am very sad😪😪😪😪😪😢😢😢😢😢😢😢😢😢😢😢😢😢😢😪😪😪😢😢😢
I can't believe I've finally found a name to what Ive been experiencing! I also get buzzing down my spine and in my arms and legs, tinnitus, brain fog, muscle fasciculation, floaters etc. Mine doesn't bother me terribly thank goodness. I used to think that it was my special ability to "see" the energy moving in all things.
RJ Rod I have similar symptoms. In the beginning I had weird head buzzing and pins needles in feet bad and hands.. felt like electricity in my body those things have slowed down some.. but the floaters color swirls and closed eye swirls flashes etc. ugh light sensitivity too. 😢
@@KatelynMrsBamaIngle yeah I am sensitive to light too..not too bad but bright sunshine hurts slightly and cause me to squint. I definitely prefer the dark. Took me a while to get used to. Oh Strange thing tinnitus showed up yeeears after the visual snow. Like maybe 8 months ago
The sensation you mentioned is called parathesia even I have it. I sometimes feel raindrops on my skin too. It's called parathesia. I took some vitamin B12 and it helped me reduce it not completely thought. All the best.
hey just curious, do you possibly have diabetes? or even a family history of it? i have the visual snow thing too and i'm starting to see some connections between the visual component to "low blood sugar"
@@justcurious5928 I've taken b 12 for years and unfortunately it doesn't help. I thought maybe it was MS. But neurologist has ruled it out . I've deduced it's possibly fibromyalgia and some sort of hyperactive nervous system issue
Hi Hamad, it is 100% no psychiatric desorder, it's 100% an organic disease, my neurologist has also confirmed it. I am curious if all types of visual snow are related to the same pathology, since the are people suffering in VS who had no migraines like me.
Who cares what psychiatrists think. They prescribe medication to patients with no physical nor neurological exams nor use imaging and testing as a PET/CT scan, EEG, composite blood tests, etc. to see what is wrong with their patients. It's purely by questions and observation. That in my opinion is gross negligence.
His talk about everyone having a cellphone makes me wonder if those that 'get it' - aren't born with it - may be impacted by wireless technology somehow.
After 8 years of searching for a name, someone else with my suffering, only yesterday did I finally find it. Made me almost tear, relieved that i'm not the only one, so happy to see people are coming together to try solve and fix this
Ameen
I have suffered for 75 years no one could help me!
I can’t believe this... all these years i’ve been trying to find out what was wrong with me. I felt so helpless and powerless over this, we need to spread awareness so that people know about it.
Thank you so much for this,. Finally this condition is being recognised!
who else gets visual snow attack’s where hey take over your whole vision, and makes you get migrains or headaches?
I’ve had VS my whole life and would love to get involved or get tests done to help for scientific research. No one has ever taken me seriously to the point I don’t bother bringing it up anymore as they just tell me I’m imagining it.
Hello Emily, we know you're not imagining it, we know it's real. We're working hard to educate the medical community and the world that VS is real. Please email me to discuss your involvement at steven@visualsnowinitiative.org.
I know this very well, that I am only immaginating this, but now we have the proove that it is not any illusion we have. I am happy how many people now is engaged to find some cure for our disorder.
I've educated my doctors. And they've kept my information. I've had no migraines since wearing my irlen glasses 😊 so yes, educating doctors does work!!
Finally this answered my questions. It got to a point that i thought im having a very deadly disease that I don’t know because I feel weird because of seeing things with my vision. I can’t concentrate thinking about it. But now i’m happy that finally I somehow know whats going on because i really am stressed and anxious for the past month. It is very difficult waking up and felt weird, my vision is somehow blurred and grainy that it made me fell gloomy. Hope my symptoms get better! Thank you for this video!
Thank you Jm for sharing your story. We're sorry to hear that you have VS symptoms but we're happy to hear that our videos have giving you some clarity. Please keep us posted, thank you. If you would be so kind, we'd love a 5 Star Facebook review if you're on FB.
Visual Snow Initiative yes off coarse :) this video really help me a lot in somehow assuring me that what i am experiencing is true and it made feel better. Knowledge is really power and spreading the word is important specially for those people who don’t have means to search the internet or to contact a medical professional and educate themselves. I am a healthcare professional and health teaching is really important. I am sure that i am not the only person here in the Philippines that suffer from VS symptoms. How sad and terrifying it could be for those who don’t know they have VS, id know cause i have felt the-same but being informed that i am not alone gives me hope and positivity. Thanks a lot and hope many more research about VS in the future :)
I can so relate I thought I was hallucinating when it started it scared me.. :(
Jm Patentes how are you now?
I salute you!!how amazing to hear somebody talk and believe xxx
Thank you for the work that you do on this topic. It's heart-wrenching to see your healthy 15 year old brought to tears from this condition. Glad it's been recognized and that there's some glimmer of hope for the future...
Dr. Yasser, that was a fantastic talk. I had no clue this is a condition but am so glad I learned about it so that I can pass it along to people that may be suffering.
It's awesome to see that it's not just me that has this, and research is being done on this!
The fact that visual snow isn’t normal is just mind blowing to me! I can’t remember a time without it. The thought of looking a a wall and _not_ seeing hundreds of tiny dots is unimaginable lol
Mine isn’t bad enough to be impairing for most of daily life (as far as I’m aware, I suppose I’m not the best judge haha) but it’s still annoying.
Thanks for sharing, we appreciate hearing from you. 💗🤍
I have had visual snow for 24 years and have been called a liar for having it for 20 years. I have stopped talking about it for 4 years.
I’m not alone 😩
No you are not. We're here for you Kettly.
Visual Snow Initiative 😊😊😊
I have just found out today that other people share this visual experience!!! Hurray!
Thanks for sharing Gemma. Hopefully you have joined a Facebook support group and are now part of a large community. Here's the link to a couple of good groups: facebook.com/groups/VisualSnowInitiativeDiscussionGroup & facebook.com/groups/visualsnowsupport.
Tengo esto desde nacimiento y estoy muy acostumbrado a el problema, aun asi me alivia saber de todo esto.
Gracias por compartir, nos complace saber que ha aprendido a vivir con VS. Estamos aquí para usted si necesita asistencia o más información, visite nuestro sitio web en www.visualsnowinitiative.org. Gracias.
MUITO OBRIGADO!!!! Primeira vez que encontro pessoas com o mesmo problema que eu!!! É um alívio!
Obrigado. Esperamos poder fornecer-lhe boas informações. Você pode encontrar mais informações em nosso site em www.visualsnowinitiative.org. Obrigado por compartilhar.
Estamos juntos então. Também tenho. Inclusive meu irmão também tem, o que me faz pensar se não é algo genético.
i love how you put this to words i been dealing with this for many years i am almost 50 now! but as of late i know have Postural orthostatic tachycardia syndrome on top of visual snow! im not sure if the two are linked but i have watched all the youtubes on the thalamus i now have low bp and low body temp and now pretty much couch bound do to POTS Visual Snow i could deal with but the POTS not so much as when i stand my heart rate goes from 70-130 just by standing.. I was one that has been on the facebook support groups since it started with eye on vision foundation.. Kinda odd now even Postural orthostatic tachycardia syndrome gets pushed under the rug as well we go to the ER first thing Doctors think is "dehydration" so they give us fluids and send us home just to go back in and have the same thing done over again so i hope you might take a look in the links of these two syndromes! God bless you and have a great day!
Your symptoms are exactly the same as my 15 years old daughter. The elevated heart rate, PoTS, visual snow.
@@candiceisthename sorry to hear that having it happen at such a young age! VS i got use to as time went on but POTS as put me to my knee's! Sad thing is nothings is known about POTS but imo i pretty sure VS and POTS are linked they all talk about the Thalamus well the Thalamus control everything! I hope u can get help with your young one and god bless :)
I've had the Visual Snow Fuss since I was young but it wasn't there during the day and barely effected my night vision. I took Zoloft for 5 days because I was bummed out over a surgery and now I have developed every symptom including tinnitus. My Father also has it and tinnitus but to a lesser degree. I'm glad at least some people are looking into it. This honestly is going to be the death of me if it doesn't get better. I never stared at the sun, or blasted my ears but I still get fucked by life...
Please stay strong Robert. We know what you are going through and understand how difficult it can be. Please know that we're working hard on treatments that could help you reduce your symptoms and ultimately we're seeking a cure. Please email steven@visualsnowinitiative.org if you'd like to be a participant in an upcoming trial. Take care of yourself.
I just figured out I have visual snow, even though I can see rather a cleary durn the day I am starting to notice more static on walls etc
I am still able to see in the dark to an extent but there is so much flickering snow like fine dust you see around the edge of a galaxy, I'm very anxious that it will get worse or will it stay the same? Can anxiety make it worse or maybe I'm noticing more because I'm focusing on it not sure
When people get it does start developing slowly or quickly does it take a month or a few months for the full onset of symptoms or is it a sudden onset and that's what you're stuck with?
TheRatzor how long you have this?
@@furqanahmed5221 to this degree about 3 months! something was up with my vision back in January, but ive always seen some tiny bit of static in the dark
TheRatzor did you use any eye drops or medicine?
@@furqanahmed5221 only basic eye drops for dry eyes nothing else
TheRatzor mine was started after using eye drops
I could never see the white board at school 😢 only recently last two years I found irlen 😦
😢😢😢😢 but i have my lenses tinted by specsavers. Doesn't solve my visual snow though.
Nice guys, you doing very good virtue!
I can reassure that it has a close relation to tinnitus and depersonalisation I got all three. Smoking weed was a trigger to make everything worse but I'm sure all three were already part of me. I could force the feeling of derealisation by over thinking life since I was younger. Now I get feelings of derealisation mostly by not even wanting to think about it. Tinnitus came later than the visual snow.
m1998 hey dude had the same exact symptoms related to derealaztion weed abuse and my tinnitus camed first after and lsd trip
Yes!! I would always notice that when I would smoke weed my vision would get like this when i was a teenager.
I
i hope we all get a treatment for visual snow /: it’s hard for me because i have bad anxiety and i get scared when i get visual snow
Thank you Juan for sharing. We know it's tough but you're not alone. We're working hard to create more awareness and get the funding necessary to find a cure. Stay strong Juan and please try your best to relax as your anxiety can just make your symptoms worst.
Visual Snow Initiative i’ll try thank you, and thank you for what you guys are doing💜
Please research vs quickly
Its unbearable! 😭
I remember when I was 6 or 7 years old and suddenly noticing that the world looked fuzzy in a way. Even with corrective lenses, the world looked like I was watching an analog television. I would see dots of light, floating shapes and I'd see shades of color in the dark. As I got older, I developed light sensitivity as a teenager, tinnitus and then migraines in my mid twenties. I never brought up the vision issues because I had no idea that it wasn't normal. It was only during a random conversation with my chiropractor that we stumbled on the topic of visual snow syndrome and I realized, oh wow, this is real? This isn't normal? I have been on medications to control my migraines for over a year now and just recently I bought new glasses with a blue light filter tint to the lenses to help with my photophobia. To my astonishment, it actually dimmed some of the visual snow that I've always had. It's still there but easier to ignore now than before. So now, I'm considering looking into studies of the syndrome to try and help with the research process. I've been dealing with this for my whole life but, if I could, I'd like to help with making it easier on others who may have trouble adjusting to it.
Dr. Khan I am in. From India.
subham roy I'm from Pak
Bro how is it now ?
Am I the only one who can form images and patterns out of the static? I often can see geometrical patterns within the dots and I can consciously change the shapes and move them around my visual field. I can’t find anyone else who has this:/
When i sleep is see blobs of color purple, sometimes I can control it to make shapes like circles
I wonder if this is connected with depersonalization disorder (which I have)
SOSA1beast I have read that it can be a symptom
Hi there, Thank you for sharing ! Absolutely, depersonalization is also a common non-visual symptom of VSS. Feel free to check our Diagnostic Criteria for more symptom information.
Nice!
here in Pakistan very few doctors know this is disease less than 0.001% 😢 I wish you guys could arrange conferences here as well
Hi there, Thank you for sharing your suggestion! We hope to bring awareness to Visual Snow Syndrome all around the world! Stay tuned for any updates on VSS in Pakistan!
Also... what a cool jacket 😎
I am a hopeless person because in nights, we can see visual snow very effectly. This disease is fu***** the life.
Stay strong, we are working hard to find relief and a cure.
Hi Mert, I also had the most problems in the dark with visual snow, which is very bothering. But I have been able to ignore this after years and I hope it will also be so for you, better was they find a cure first.
Visual snow indicative thank u for ur hard work and research
Is there any treatment for this
M suffering from this past 15 years
Hello there, how are you today? We will need participants for an upcoming trial on a treatment that has showing some good early signs. If you are interested to learn more, please email your request to participate to steven@visualsnowinitiative.org. I'll look for your email.
I would love to help in anyway . I have this persistently
I have vs ....almost a year....with brain fog...when i say brain fog i mean i feel like i am dreaming ....a very strange situation...like i have drink 2 glasses of whisky...... i am like this all the time i sleep like this i wake like this scares me a lot.....i dont have problem of concentrate im normal in this....i believe that my brain fog is not a "typical" brain fog😥😥😥
Has anyone has the same situation like me?? I am very sad😪😪😪😪😪😢😢😢😢😢😢😢😢😢😢😢😢😢😢😪😪😪😢😢😢
ΣΤΕΛΙΟΣ 0088 HEY MESSAGE ME KNOE WHAT THIS IS
@@SOSA1beast you have the same thing?? You know what this is?Did you have vs also?? How i can message you??
Stelios Blue Chania yes I have visual snow as well .. it sounds like u are having depersonalization/derealization just message thru UA-cam
Add me as a friend on UA-cam! youtu.be/addme/nL6FZmoJAWHEd-69lFnFoK7gNZn1sA
@@SOSA1beast now i see your message...tnks...send me a request again please
I can't believe I've finally found a name to what Ive been experiencing! I also get buzzing down my spine and in my arms and legs, tinnitus, brain fog, muscle fasciculation, floaters etc.
Mine doesn't bother me terribly thank goodness.
I used to think that it was my special ability to "see" the energy moving in all things.
RJ Rod I have similar symptoms. In the beginning I had weird head buzzing and pins needles in feet bad and hands.. felt like electricity in my body those things have slowed down some.. but the floaters color swirls and closed eye swirls flashes etc. ugh light sensitivity too. 😢
@@KatelynMrsBamaIngle yeah I am sensitive to light too..not too bad but bright sunshine hurts slightly and cause me to squint. I definitely prefer the dark. Took me a while to get used to. Oh Strange thing tinnitus showed up yeeears after the visual snow. Like maybe 8 months ago
The sensation you mentioned is called parathesia even I have it. I sometimes feel raindrops on my skin too. It's called parathesia. I took some vitamin B12 and it helped me reduce it not completely thought.
All the best.
hey just curious, do you possibly have diabetes? or even a family history of it? i have the visual snow thing too and i'm starting to see some connections between the visual component to "low blood sugar"
@@justcurious5928 I've taken b 12 for years and unfortunately it doesn't help. I thought maybe it was MS. But neurologist has ruled it out . I've deduced it's possibly fibromyalgia and some sort of hyperactive nervous system issue
I do not know why, but psychiatrists insist that it is a depersonalization derealization disorder
Hi Hamad, it is 100% no psychiatric desorder, it's 100% an organic disease, my neurologist has also confirmed it.
I am curious if all types of visual snow are related to the same pathology, since the are people suffering in VS who had no migraines like me.
Who cares what psychiatrists think. They prescribe medication to patients with no physical nor neurological exams nor use imaging and testing as a PET/CT scan, EEG, composite blood tests, etc. to see what is wrong with their patients. It's purely by questions and observation. That in my opinion is gross negligence.
Hi there, depersonalization is a common non-visual symptom of VSS. Feel free to check out our Diagnostic Criteria for more information💙
His talk about everyone having a cellphone makes me wonder if those that 'get it' - aren't born with it - may be impacted by wireless technology somehow.
18 minutes in