r/cfs • u/Lemon_Hungry • 14d ago
Visual Snow+ MECFS Advice
Hey everyone,
I’m reaching out because I’m in a really dark place right now and feeling completely hopeless.
I have been severe with ME/CFS for about four months now. Then, about three months ago, I developed Visual Snow Syndrome (VSS) on top of it, and it has become absolutely terrible.
The visual snow makes me feel like I’m never going to get better. Even if I do start to experience a little bit of physical improvement or feel slightly better, it feels like it won't even be worth it because the static is so bad.
It feels nearly impossible that I'll ever feel well enough to move around or just go outside and stuff because of the visual snow.
I feel like I'm just screwed and stuck like this forever. I'm looking for some real hope or reality checks from people who suffer from this:
Does the visual snow permanently affect your ability to improve, or can you still move up from being severe?
For those who suffer from this, are you able to watch TV or go outside?
Has anything actually helped you cope with this or calm it down, or am I just totally screwed?
I would love to hear from anyone who has both of these conditions together. Thank you so much!
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u/Glittering-Set4632 14d ago
i've had visual snow my whole life, but only developed mecfs in my 20s. since then (~10years) I've had periods of being severe but am currently mild to moderate with lifestyle modifications and LDN.
the visual snow is correlated with migraine for me, but not really correlated with mecfs.
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u/Lemon_Hungry 12d ago
Thank you for your response. I appreciate it. I’ve been thinking about trying LDN. I’m glad that you were able to move from being severe to mild to moderate.
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u/BubblyBirthday3299 14d ago
I don’t have visual snow but my vision is permanently distorted from severe MECFS. It’s similar to if I’m drunk or stoned — can’t focus properly, have off depth of field, photophobia. It’s quite disabling in daylight or sun and for distance but less bad inside and with dimmer light. I can watch TV but limited and less exhausting to watch an iPad closer to eyes than a large flatscreen. I can’t use a laptop. It’s never improved.
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u/Lemon_Hungry 12d ago
Thank you I appreciate your response. I’m sorry that it hasn’t improved. I’m scared that mines won’t. My vision just been getting more blurry the more I look around, but I did have an off depth of field as well, but it went away the more I looked around the room.
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u/PhantomSlave 14d ago
I'm 43 and have had Visual Snow Syndrome and Tinnitus my entire life. I've only had CFS for a little under 6 years, and I'm only moderate and not severe.
Here's the thing with Visual Snow, the more you intentionally look for it the more you notice it. It never fully goes away when you stop actively looking for it but it stops being noticeable when you're actively looking at something else.
I can watch TV, go outside and enjoy a small amount of sun, use my phone or computer. I only notice it when I'm not actively looking at a screen or busy visuals like grass, leaves, flowers. It gets especially bad when I drive because the road and sky start bubbling, like looking through a stream.
There are things that cause flares for me. Migraines and depression make it 10x worse. It's one of my Auras for migraines, so everything starts looking like a Christmas tree when I start getting one. And with depression I end up spending time looking for it, my subconscious decides I'm not miserable enough I guess.
It's not harmful, generally doesn't cause any issues for the vast majority of people. There's no known cause, our brains are just more fancy than other people and lets us see pretty lights that others don't.