Visual Snow Initiative's Personal Stories Series: #7 Stephanie Fries
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- čas přidán 12. 09. 2024
- Check out the 7th video in the Visual Snow Initiative’s Personal Stories Series! Listen to Stephanie Fries share her #VisualSnow story, describe how she learned her closest friend had also developed #VS, and express her experience with the accompanying symptoms.
I’ve had VS my whole life as well and like Stephanie said, the snow looks a little like sparkles and glitter. I see it like a shimmer. It doesn’t bother me at all. I see it more when I’m really tired or in the dark. Against light and dark surfaces. I also don’t want to lose the snow. I don’t know what it looks like not to have it. My problems are loss of contrast in low/dim light, self lighting of the eye when exposed to the dark, my eyes don’t focus in the dark at all, I get halos and after images and trails and ghosting, light sensitivity, glare, and my vision darkens when I gaze at something. Sometimes the blue field entoptic things make my eyes hurt, almost triggers like a migraine with severe light sensitivity. I have to wear sunglasses all the time or make sure I don’t look at the sky. Cloudy days are hard for me because I’ll see those things everywhere and then it becomes distracting even when it’s not painful. So I understand why people can get anxious when all of this comes out of nowhere. My symptoms started to get worse, most likely associated with getting severe whiplash about 14/15 years ago, and I’ve been experiencing a lot of dizziness/vertigo. Persistent dizziness. Possible PPPD and/or maybe vestibular migraines. Only found out about VSS recently because I thought everyone saw the snow like me. Been an interesting 2 weeks 😂😂
Thanks for your description. I suffer from the same bullshit since 6 months. Constant vestibular migraines, dizziness, PPPD, and of course this static fuzz, in the dark or on bright surfaces… i don‘t know how this nice woman has this positive outlook, i guess pain isnt one of her symptoms. I just want this nightmare to end asap…
It's not the visual stuff that really bothers me, as I've learned to deal with that. But the cognitive issues (brain fog, trouble learning, concentration issues, depersonalization, etc), THOSE things are very difficult to cope with.
Absolutely agree
In my opinion visual snow in some cases is a symptom of dp/dr and anxiety and no vice versa.
and tinnitus....
And those freaking floater's are hell.
I have visual snow but it's quite different from her description. I was not born with it and I really miss being able to see clearly, especially in low lighting. I agree that the photo phobia is really hard to deal with. I've learned to live with it, but I definitely don't enjoy it like she does. Good for her, though, what a great outlook on life!
Me too not born with it just need a cure
It's fascinating how our brain/eyes perceive the world differently from one another.
I also have laser show at night. All kinds of crazy shapes vibrating, changing form constantly.
Gustav Adolf same scared me when it started lol
Me too it’s green light show it’s annoying
Thank you for helping me I also watch the visuals to go to sleep at night
I thought my "sparkle vision" and later light show were brought on by mediation. 😂 It started intensifying and becoming a problem so I stopped meditating. I thought my body can't handle all this Kundalini engergy!
Photo phobia and screens are tough for me but my sparkle vision doesn't bother me as much in the forrest light. I get horrible after burns from too much contrast. I also have debilitating migraines. Still, I think the light show behind my eyes is beautiful as a carry over from practicing meditation and thinking it was a "third eye" phenomenon, I can't help but meditate with it sometimes as I'm falling asleep watching the colors and patterns morph like a kaleidoscope. It's a perk in the piles of problems.
Hey Ginger, thanks for sharing your experience with us, that's wonderful that you can turn your visual symptoms into a positive. Good for you, we hope that you have continued to do well.
I think it makes a big difference whether you‘ve always had vss or got it at some point. If you are not used to the symptoms, they might naturally become distracting more quickly.
I had multiple multiple tests at age 6 or 7 in 95 or 96 when I spoke up about it. Nothing was "wrong". I got glasses which makes the static less notcobale but still there. My vision has gotten worse all my life. Still not evening out. In the dark or with one eye covered I have to blink rapidly to keep the darkness from Overtaking both eyes. I have to blink rapidly to even see the stars at night. I think I've seen less the 5 shooting stars in my life and I'm almost 30 because of it. I have random floaters, sensitivity to light, and impaired night vision when driving. When my glasses off I cant see about 2 inches from my face The snow is so bad. I never knew this had a diagnosis because back then nothing came of all the tests. Im Glad that I'm not the only one.
I can't say I agree with you Stephanie, this isn't fun for me, it isn't interesting, and i haven't found a way to "enjoy" it. I wouldn't say people look at this condition in a black or white fashion, but this is a condition that effects people very differently.
Thanks for sharing your experience. Everyone experiences VSS differently. For some, symptoms can be debilitating in their daily lives, while others their symptoms may be manageable. We appreciate you sharing your feedback and we hope you're feeling good💗. Stay strong!
I've had tinnitus for 7 years the visual snow is new
Im not sure if you've experienced depersonalization. Research that Stephanie and maybe that will help you understand what others are experiencing. Side note: I just happened to be overcome with serious anxiety and depression at the same time, at 18, as visual snow. I was also studying certain aspects of quantum mechanics and the question of how real "reality" is and it really messed with me. So just be mindful of others who may not be experiencing visual snow the same way as you or you and your friends.
I had to stop work, barely get out of bed and think about suicide 10 hours a day. DP and VSS has robbed me of a life. I never knew a human could feel so ill. I feel so weird all day long. Just detached, out of it. I have concept of time, events etc.. it's hell on earth.
@@bindingjames you'll get through it man trust me. There's always something you can do to make life worth living for
Hello James, thanks for sharing with us, we hope that you are doing well.
It wasn't easy but I accept them both now
I have mild static just in dark when i awake up in the morning, but what more annoying is floaters and non visual symptoms like headache, dizziness, depersonalisation i have good vision but all the time i see the world it's look strange
You are amazing, thank you!
Very interesting cos I think of it as a gift as well. I think it’s kinda cool in a way but it does give me anxiety sometimes when I pay close attention to it. I always tried to meditate too but really never understood when people would describe “black” when closing their eyelids. I see so many colors. Every color you can imagine just dancing and nobody seemed to understand it and it was hard to meditate because of it.
If anyone can relate to me, please share.
I've definitely got VSS now, but the intensity of the other effects aside from the snow, such as the tracers or the appearance of everything being under red and green lamps come and go. The snow itself and the afterimages are relatively mild most of the time, mild enough that I'm not in a constant state of panic about them anymore. I also see an aura of light around people if they contrast with their background.
Got the tinnitus now as well. Fortunately the intensity fluctuates, because when that gets really really loud, it's the scariest one. I would most definitely kill myself if I knew I would have to live that way.
I've been having bizarre attacks almost always at night too, where all of the visual symptoms hit me hard at once along with this weird psychology that is almost like being drunk or stoned or something. It's neither good nor bad in itself, just really different, and I really focus on the present moment and become introspective. My anxiety is quite bad and I am also lazy now, I just lay around at home in bed, even though I take adderall and drink coffee, so I really should have no problem staying out of bed. I think these parts might be a consequence of the belief that the good section of my life is over, and not caring whether or not I live or die anymore. I don't think they are neurological symptoms. Could be wrong about that.
I stayed awake drinking coffee for days because I was afraid to fall asleep because when these attacks happens my body becomes so intensely relaxed that my breathing almost stops entirely. It is horrifying, almost like if your foot falls asleep and you can't move it, but it's like it's my chest and diaphragm falling asleep so the inability to move is the inability to breathe.
Also, my arm strength has gotten so weak, my arms are so easily tired. Also, I have stinging eye pain all the time. Also, my arms and legs fall asleep so easily, just sitting in normal positions.
Have you had any of these other symptoms? I've been having bizarre attacks at night too, where all of the visual symptoms hit me hard at once. I stayed awake drinking coffee for days because I was afraid to fall asleep because when this happens my body becomes so intensely relaxed that my breathing almost stops entirely. It is horrifying, almost like if your foot falls asleep and you can't move it, but it's like it's my chest and diaphragm falling asleep so the inability to move is the inability to breathe.
Also, my arm strength has gotten so weak, my arms are so easily tired. Also, I have stinging eye pain all the time. Also, my arms and legs fall asleep so easily, just sitting in normal positions.
Have you had any of these other symptoms? VSS is a part of the puzzle for sure and I'm grateful for that, but I still feel mostly alone. I have a burn on my hand from a month ago when I touched my hand to the inside of the oven. At the time I thought it wouldn't even leave a mark and that I pulled my hand away instantly. By the look of my hand now, I can see that I had held it against the burning metal for a moment before realizing that I was touching something hot. Something is definitely wrong with my nerves and muscles, or the parts of the nervous system and brain connected to them.
My arms are very tired from all this typing now.
I'm losing it
.somebody help me .the static won't go away and nobody understands
Bro i'm on the same boat..
We know it can be difficult, stay strong and know we’re always here for support! 🤍
Visual snow..floater.When I look at something then I notice how
everything seems to be flickering and trembling as if the world around
me was vibrating. Anyone else who has this? To me this is definitely not
normal but no doctor could help me with it. I also have migraine aura. I
am affraid i will lose my vision
I also have the same symptoms as you. And I have the same fear
Hey my vision is also vibrating and trembling .but I don't see static.what is that 😢😢???
Ive had VS my whole life but only recently began to become a problem. I plan to see a doctor about it but I doubt they can help.
Did you have any luck?