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Hey everyone! I see it too!

Discussion in 'Introductions' started by Dustin R, Mar 19, 2018.

  1. Dustin R

    Dustin R New Member

    Hey everyone! I can't even begin to describe how amazing it feels to finally know what condition I have haha. I've had visual snow since I was 3 and remember the very moment I noticed it. I have slowly made my way through life with it and finally discovered what it was called just recently. It has been overwhelming and so relieving! I wrote my latest paper for school on it and my teacher loved it. I've been teaching fellow classmates as well. I really am hoping to meet and chat with people online about this, for up to this point I have been alone with this confusing matter and no one really ever understood or believed me. Thank you! This site looks amazing! Hope you're all having a nice day! :)
     
    Scotsofrenic and Jonwaldo like this.
  2. Hey Dustin,

    I suggest taking a look at NeilVisualSnowMan’s website as it is full of specific information.

    Congratualions on writing an essay on VS. Few people have it, and fewer people know about it. How do people react to this? Personally this is not something that I would share with my school as people are indifferent to others plights and usually get labeled.

    We know very little about VS. It’s only been recently accepted as a seperate, distinct condition from migraine with aura. The hypothesis is that there is hyperexcitability in the part of the brain that processes sight.

    All we can do at the moment is ignore it and run self experiments to find out what helps and what doesn’t.

    Hope this helps! :)
     
  3. Dustin R

    Dustin R New Member

    Hi NothingIsPlain,

    Nice to hear from you and thanks! How long have you had VS?

    How did people react? Well, I can't speak for all my class, for most of them really didn't have anything to say and don't talk to me anyway haha. But a few of them enjoyed my descriptions of VS. One of them seemed to take a liking to the idea and actually went researching himself, writing visual snow on his arm with a pen to remember. Also for the next two classes he'd walk up to me and shot "What do you see," which was rather amusing. My teacher however was rather fascinated with it and did further research, asking me to send her more information. No one, naturally, knew what VS was, so I think they took it pretty well under the different essay. For those others I've shared it with, some family and friends, they have all taken it very positively, though I haven't told many at all. How freely do you speak of it?

    I'm really happy to have found sites and places to speak to people about VS though and am excited to learn more. Seeing that there will be the first ever conference on VS in San Francisco is rather exciting. I hope more continues to come out about it.

    Anyway, thanks again for saying hello!
     
  4. Hey Dustin,

    I’m 18 now, and I’ve had VS for as long as I remember.


    It’s great to see more people becoming aware of this unique condition! The more people that know about it, the more likely we’ll get a positive reaction out of this. Back in 2014 there were two crowdfunding sites dedicated towards the research of VS, but they fell quite short of their goal. They were hoping to get half a million USD and got roughly $150,000 — a good amount, yet not enough. Problem was that not enough people saw the webpage over the two years it was open, so if we were to do it again, we would need to promote through YouTube somehow.


    Unfortunately, I don’t speak freely of it at all. I’ve told my family and a friend about it and they were sympathetic about it saying that it sounds annoying, but it doesn’t sound too bad, rather a nuisance of a condition to have. I’m not too motivated to share this information with my apathetic high school peers who would likely label me as I don’t belong to a clique. However, I’ve considered being more open with this since I am graduating in about a month.


    I’m really happy to have found these sites as well and am excited for the that Visual Snow conference!


    I feel like I’m forgetting something, but you’re welcome!
     
  5. Dustin R

    Dustin R New Member

    Hello again NothingIsPlain,

    Good to hear from you again. I've never gotten to chat with someone about VS before, so this is great. :) Sounds like we are pretty much in the same boat here. I'm 19 and have had VS for practically all my life. However, I have a vivid memory, which I write in detail in that essay I mentioned, about when I was about 3 years old remembering VS "turn on." I was super young, and obviously can't remember anything else from this time, but it was horrifying to me when my eyes just suddenly began to change and what I saw. I've had VS ever since, and as a small child, screaming and crying over the "scary stuff" as I called it then, my parents could not understand. I grew up feeling a bit insane really, for anyone I told for years said it was just my imagination. I can't even begin to describe the feeling of having a name and learning about VS for the first time. It was such a relief of not feeling alone, you know? I didn't find out what it was since early this year, so I went for almost twenty years not knowing a thing about it and feeling helpless.

    I hear you and understand what you said about not speaking about it much. Like I said, I don't speak about it much too. Not sure how you can even bring that up in a conversation anyway haha Sorry to hear you are concerned of being labeled if you did though. That'd be messed up, people can suck. But hey, being different is always better. Why on earth would anyone want to be like everyone? People like you and me are the ones who are going to change the word. :) And hey, congratulations on graduating next month!
     
  6. Bonjour Dustin!

    I’m as excited as you are! It’s really great to be able to have these exchanges of our experience with VS.

    Vivid memory of the event alone, or daily life?

    When I realized I had “things flying in my vision”, I just assumed that was how everybody saw. My rationale was that vision is nothing short of a miracle (not religious) and it’s acceptable to have a bit of static. Relatedly, we’re studying vector fields in multi variable calculus right now and boy does it look a lot like the organized version of VS! The Ulami Sprial, on the other hand... wow it looks like VS! https://en.m.wikipedia.org/wiki/Ulam_spiral

    It feels good to know you’re not alone, especially growing up being told it’s just your imagination. Freud would argue that it’s your unconscious trying to tell you something, though this sounds unlikely as we’ve had it for as long as we can remeber. Some develop it later in life, which could support that theory.
    I believe the VS website said there are at least 6,500 people with this condition?

    I’ll try speaking up a bit more about with my friends and see if I can have a conversation about it. I don’t think that I’d care too much since the end of high school is near!

    I’d also like to add that I don’t remeber a lot things very well; There a few times I remeber on clearly and can remeber the rest of what happened, as well as some associations. I have what I call a stimulus based memory where only by doing things will I remember things I have done. I’m a bit scatter brained, which makes it hard to concentrate. In my defense, VS is quite distracting.

    Thanks and I agree! This is a unique thing that sets us apart from everybody else. On the surface, it can appear to be a set back. But underneath this is a success story that can motivate us for better.
     

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    Last edited: Apr 23, 2018
  7. Dustin R

    Dustin R New Member

    Hey NothingIsPlain,

    Wow, the Ulami Sprial is very interesting. Oh and agree, I'm still almost shocked that some people don't see things with VS. It's just a part of life for us haha. However, I still wish I could see pure darkness, you know? That must be incredible.

    Thanks for more data. It's interesting thinking what Freud would say. Oh, and 6,500 sounds about right. I remember reading something like that. Though it fells like a lot more people are announcing they have it now. There seems to be more out about VS now than even just a few months ago.
     
  8. Hello Dustin,

    Hopefully it can be used as a visual aid for when I explain visual snow to others. I know at least my math teacher would be interested haha! VS for sure is weird. One of the characteristics of VS is impaired night vision. It’s actually thrilling to be in the dark and move along a preplanned set of steps. Not hitting the wall even though you feel like you’ll hit it is quite thrilling! But hey, if VS came equipped with night vision I think I’d have a blast roaming around with the lights turned off. Lol, I’m such a nerd.

    Yup parts of his (cocaine assisted) works are stil widely accepted today, particularly by dream analysts. That’s likely to be an underestimate. It seems VS is making a comeback since about 2014, around when this forum stopped chatting completely.

    Sorry for the late reply, the VS server crashed last night.
     
  9. Dustin R

    Dustin R New Member

    Oh man, I wish it came with night vision! Haha I want to use these VS powers for good!

    I sure am glad VS is making a comeback, seeing all the new stuff coming out on Facebook pages and such is very interesting and helpful. I'm still getting over the fact that I finally know others have it and what it's called haha
     
  10. Like calculating trajectories of projectiles? I play soccer and it'd be awesome to know ahead of time where the ball will land.

    Wikipedia has some pretty good articles on the symptoms of visual snow.

    You may want to start with this one:
    https://en.wikipedia.org/wiki/Blue_field_entoptic_phenomenon
     
  11. Dustin R

    Dustin R New Member

    Oh that's really interesting!

    Were you able to attend the VS conference today?
     
  12. Glad you like it!

    No, I live in Minnesota. I'm going to wait for the published video in july.
     
  13. Jonwaldo

    Jonwaldo New Member

    Wow - I can't believe there are so many sufferers of 'tingle vision'. I feel like I'm amongst fellow 'believers'.
    I'm getting suspicious smirks from my colleagues since I found out that this is actually a thing. Perhaps my audio visual friend will finally shut up about 4k and let me buy DVDs in peace.
    I consider my vision to be almost normal - apart from the fact that I lost my right eye in a childhood accident with a pretty hard blow to the head with a chairleg at 16 months of age.
    I have the overlay of analog TV static and tinnitus too but, apart from that, I'm good to go. Oh... let's not forget the Bipolar either.
    Happy days!
     
  14. Jonwaldo

    Jonwaldo New Member

    I learned about this for the first time just recently too! Naturally I'm getting a lot of raised eyebrows from my colleagues. I fear I may be going on about it too much :(
     
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  15. DIME

    DIME New Member

    Can you describe what it was like to watch the onset of your own condition?
     
  16. Dustin R

    Dustin R New Member

    Hey DIME,

    It was at night and I was inside my room getting ready to go to sleep when all of a sudden it just began to appear. It terrified me. Here let me paste in the part I discussed this moment in that essay I talked about.

    "Suddenly, my world began to flicker. Reality was retreating into a farther plain and a new lens coated over my world. Rubbing my eyes frantically, I peered around at the chaos of messy static and vivid color that had awaken from the shadows. No matter where I looked it followed, mocking and forcing me to watch what I never asked to see. I cried in honest horror for my parents to save me from the light. They came in a hurry asking what was wrong as I quivered in fear of the unknown. How could I describe this rampant discovery?"

    Hope that helps a little. If you ever want to chat, send me a message! :)
     
  17. DIME

    DIME New Member

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