I've Never Seen Plain White Paper || Visual Snow Syndrome [CC]

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  • Опубліковано 29 сер 2024
  • And I thought it was totally normal! Watch me get personally victimised by the sun for 13 and a half minutes, and learn about a "rare" neurological condition while we're here... I would also like to clarify that the visual effects used in the first 30-40 seconds or so are as accurate as I could make them, but they are still a very watered down version of what I experience, I'm just bad at editing visuals.
    Visual Snow Syndrome: rarediseases.o...
    Photophobia: www.specsavers...
    Palinopsia: eyewiki.aao.or...
    Negative After Images: www.illusionsi...
    Visualsnow_Pulse || Visual snow and blue field entopic phenomenon: www.instagram....
    Visual description: Max is sat in front of their wall of pride flags wearing a black vest and glasses with clear frames and orange tinted lenses. They start by reprimanding a plastic snowflake before talking to camera. They snapshot what their vision looks like using filters to show visual static, excessive brightness, and splotches of colour.
    What's this? • Caption Your Content- ...
    Like what you watched? Consider buying me a coffee! ko-fi.com/ouchm...
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КОМЕНТАРІ • 30

  • @PoeLemic
    @PoeLemic Рік тому

    Thanks for covering these topics. Glad VSS is coming out of the closet, because so many people are suffering. And, we're supposed to "Suffer in Silence". But, you are breaking the mold.

  • @girlwiththeblueglasses8284
    @girlwiththeblueglasses8284 3 роки тому +2

    Hey, it’s Ellie! I have Irlen Syndrome, a sort of “sister condition” to VSS. It’s a neurological disorder that affects the brain’s ability to process visual information. Basically, the chemicals in the part of my brain that processes vision don’t work properly, and it sends off too many signals. I was also always in the “gifted and talented” sets in school. My neurologist and optometrist told me that had I misbehaved, I’d have been diagnosed much younger. I was diagnosed about three years ago. It was hard to get a diagnosis as the NHS won’t diagnose it as it’s very stigmatised. I was diagnosed privately. It’s amazing to see more and more people in the UK coming forward with Irlen’s or VSS. I was born with it and it will never go away, but learning to accept it and accept that I’m not going crazy, I actually can’t see. Irlen’s is also misdiagnosed as Autism, ADHD, Tourette’s (which I have as a secondary condition), Dyslexia, and developmental delays. For me, having a label has been so much better. Before I was diagnosed, I felt awkward, as I couldn’t explain it and I got lots of funny looks, but now I just need to go “Oh yes, I have Irlen Syndrome” and rattle off the medical definition, which I have memorised. It’s wonderful and my glasses have changed my life for the better. Hopefully yours will too. ❤️

    • @OuchMouse
      @OuchMouse  3 роки тому +3

      Right!? I’m totally with you on that. My life and self esteem have improved already knowing I actually have a reason why I can’t read, knowing there are things I can try to help that, and almost sort of having permission to ask someone to read something to me in a pinch. Being able to explain what’s going on with your body is so beneficial to mental health it’s unreal 🥰 I’m so glad you’re doing well with it!

  • @zs2001
    @zs2001 3 роки тому +3

    I have had the static and other symptoms for almost 10 years now. Unfortunately, there are no doctors with knowledge of visual snow syndrome here in India, sou you mostly get a 'you're just seeing things' from the doc. Well, of course I am seeing things lol. They're always there, even when I close my eyes.

    • @ayansircar5750
      @ayansircar5750 3 роки тому

      U are from india !!!! I am too . i thought i was the only one here and was depressed for the same. The only thing that actually bothers me in vss is the palinopsia. Wby ? Thankfully i have convinced my parents about this and i am looking forward to the tinted lens as a treatment for the afterimages. Do you have any suggestions as you had it for 10 years, did it progress or did it become stable after progressing a bit ?

    • @zs2001
      @zs2001 3 роки тому

      @@ayansircar5750 It became stable after a year but has got a lot worse in the past few months.

    • @ayansircar5750
      @ayansircar5750 3 роки тому

      @@zs2001 do u use tinted lens ?

    • @zs2001
      @zs2001 3 роки тому

      @@ayansircar5750 Which ones? Any specific tint?

    • @ayansircar5750
      @ayansircar5750 3 роки тому

      @@zs2001 i searched and found that yellow and orange tints help with the snow , but i don't know which tint will be helpful for afterimages

  • @xpersonx
    @xpersonx 3 роки тому

    I wonder if the orange glasses may help me working outdoors in the summer months. I get this thing where my eyes get so irritated by the heat and bright sun that I can't even stand to keep my eyes open. They tear up and for some reason the tears make the irritation much worse - quite troublesome when I want to drive.

    • @OuchMouse
      @OuchMouse  3 роки тому

      Definitely worth a go! Or various tints on sunglasses 😎 I was also recommended the transitions lenses that change their tint in different light levels but they were expensive 😂

  • @haqsach4147
    @haqsach4147 Рік тому

    Are you still having floaters?

  • @Bevsboobs
    @Bevsboobs 2 роки тому

    This is me with vs but not deafness .. its crazy annoying 😔 iv also been tested for irlen syndrome and now waiting for my blue tint glasses

  • @windy2075
    @windy2075 3 роки тому

    I've also got a severe case of vss, recently got diagnosed a few months back after 2 years of doctors visits. How did you find out about your night vision being different from everyone elses? I've got no clue if what I see at night is normal as I have nothing to compare it to.

    • @OuchMouse
      @OuchMouse  3 роки тому +1

      There are comparison pictures floating about on the internet which I related to, and just chatting to my doctors about experiences they were like “yep”. I just struggle to see in the dark more than the average person, I haven’t mastered how to describe it very well yet 😂

  • @yarrowwitch
    @yarrowwitch 3 роки тому

    Well, I’ve got the tinnitus & floaters, I get retinal migraine that cuts out the vision in me right eye, and I’m night blind - don’t see darkness but weird wavy lines in disco colours. 🥴

    • @OuchMouse
      @OuchMouse  3 роки тому

      Eyes are so weird aren’t they!

  • @darrenmooten7604
    @darrenmooten7604 3 роки тому

    Where was you diagnosed? I was diagnosed by a neuro in London

    • @OuchMouse
      @OuchMouse  3 роки тому +1

      Optometrist with experience with VSS, as I already had a bunch of the usual suspects ruled out in previous testing, and my GP was in full agreement as well ✨

    • @darrenmooten7604
      @darrenmooten7604 3 роки тому

      @@OuchMouse am glad you made this video. BTW there's a charity called visual snow initiative who have tons of material on VSS from researchers studying the condition

    • @OuchMouse
      @OuchMouse  3 роки тому +1

      I follow them on Instagram, they’re pretty good 😁

  • @barrytaylorprofoundlydeafi2479
    @barrytaylorprofoundlydeafi2479 3 роки тому

    Hi max I love your video's you don't pull any punches! I am severely to profoundly deaf! I have worn hearing aids for 25 + years! I have only one good eye,the other has scaring from an ulcer when I was younger,when I get an infection in my good eye I use a red/white cane & am classed as deaf/blind! Do you use a white cane? Imagine the looks & comments I get when one minute I have a white cane then nothing! I have degenerating discs in my back leaving me incontinent & having a Foley catheter full time! On the plus side I don't get up in the night for the loo! You can hopefully see my hearing aids in my profile! Nobody says a thing when you wear glasses,but hearing aids are a different matter! I don't sign as I have trouble spelling!
    I was sexually abused at 14 by a school teacher! That led to gender confusion! The male side of me sees a woman in say a sexy dress & the female side of me wants to wear it! I get labelled by some as a crossdresser but I feel more me wearing lacy underwear! Until a while ago I did not know what non binary was! I like your name,on Twitter I call myself Sam! Sorry for rambling on! And for the record your glasses highlight your lovely face! And well done with the short hair and for showing off your hearing aids,it might mean more deaf youngsters will get them if the need them! I found one brilliant American lady that loves her hearing aids,Emily from definite hearing on you tube! So what if you wear a mask to stay warm! We need glasses to see & hearing aids to hear! If you want to know more just ask! I have subscribed & will buy you a coffee! 💖💖💖

    • @OuchMouse
      @OuchMouse  3 роки тому +1

      Thank you so much! Welcome to the channel 🥰 I don’t currently use a white cane, but a lot have people have suggested giving one a go so I might try it. Who knows what the future holds. I do find it strange how people treat glasses and hearing aids so differently, but now my glasses are so obviously “not standard” people treat them more like hearing aids. Odd!

    • @barrytaylorprofoundlydeafi2479
      @barrytaylorprofoundlydeafi2479 3 роки тому

      @@OuchMouse thank you for being kind enough to reply! Growing up I did not have social media so I felt lonely & isolated! So now I have the chance to give something back! Plus get welcome advice! The trolls do get me down & I go in to my shell!
      As for the white cane,how many times have you been out at the shops etc,it's either turned bright & sunny or the cold makes your eyes run & you struggle to see! So perhaps have a word with RNIB about the right white/red cane for you! I keep a cane folded up in my bag incase a bug etc gets in to my good eye! I take out my cane & I can find my way home! You have hearing aids to hear & glasses to see,even a wheelchair for when walking is a struggle,so why not a white cane as you said your classed as deaf/blind,people also don't understand coloured lenses are not just a fashion statement! They help you see,you did say you would like to try transition lenses but they are expensive!this buy me a coffee you have listed down below perhaps you could raise money for those lenses? Can't wait to see more of your video's you rock! 😄😄❤️❤️

  • @misfitrmdiqpiq
    @misfitrmdiqpiq 3 роки тому

    what spots now? that's just different filters, not spots

    • @OuchMouse
      @OuchMouse  3 роки тому +1

      I couldn’t find filters that did it perfect justice, but I was also trying to show the excessive brightness and blotches too. It’s like TV static constantly, but larger spots, which aren’t wanted in a filter so they don’t really exist to the extent that I see them 😂

  • @yarrowwitch
    @yarrowwitch 3 роки тому

    Oh and I’m high register deaf in me left ear 👂