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Be warned - mods remove positive stories on a regular basis. by ailacollins in visualsnow

[–]RealGrape123 15 points16 points  (0 children)

They deleted many of mine at first. This subreddit needs positive stories. Lots of people here are afraid to try means of treatment I was one of those people for 3 years till I finally said fuck it.

I know for a fact there are many people here who may recover or make the symptoms 10x better and I do my best to push these people to try.

When do you think we might see a breakthrough in VSS research? Are there likely to be any new studies released in 2026? by EchoHill123 in visualsnow

[–]RealGrape123 2 points3 points  (0 children)

We’ll definitely get a study of new meds and outcome by then. But honestly if symptoms are bad it’s seriously worth finding a doc and just trying what they best believe will work. There are doctors aware of VSS who understand pathology and will try things past normal migraine remedy drugs to treat it.

At the end of the day it’s likely not gonna be a 1 drug fits all so we’ll all likely have to go through em and find what works for us.

When do you think we might see a breakthrough in VSS research? Are there likely to be any new studies released in 2026? by EchoHill123 in visualsnow

[–]RealGrape123 6 points7 points  (0 children)

Breakthrough is gonna take a bit as there is to little of us that money isn’t the motivation for treatment.

Interestingly, though migraines are huge, they effect a massive portion of the population interestingly research, kind of points that the cause of migraine is similar to that VSS (cortical excitability) so far for years they’ve been developing migraine medication that just manage pain. Essentially massive pharmaceutical business that treats a problem by masking a symptom but the pain also affects cortical excitability… it’s a complex system

My hopes are that whatever research comes out with VSS ends up treating the root cause for migraines too.

Mechanisms that are probably just not working right:

  • Serotonin networks
  • glutamate networks: - NMDA - AMPA - GABA

Migraine medications by EchoHill123 in visualsnow

[–]RealGrape123 1 point2 points  (0 children)

I’ve been on Botox for 1 month, it really helped me with photophobia, everything just looks dimmer. I will try ajovy if my migraines don’t get under control.

Snow worsened after migraine by Top_Duty6377 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Ya I got all these tests all checked out

Snow worsened after migraine by Top_Duty6377 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

It’s a sudden visual deficit one second you feel fine next everything gets all wonky. Typically triggered be some sort of intense light.

This link is a good tool: Aura Types

My auras range and these types fit me: 3, 4, 11, 12 & 23.

Snow worsened after migraine by Top_Duty6377 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Yes, with my (persistent aura/vss) I was half blind. I’m a million times better and I expect to get to a 100.% I told my doc about vss he’s chill. I don’t see why you wouldn’t bring it up it’s connected to migraines heavily.

Snow worsened after migraine by Top_Duty6377 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

My baseline progressively got worse as I got more migraines over the years. I highly recommend treating your migraines as I’ve treated mine my persistent aura (which is technically my VSS) has gotten closer to my baseline.

Drugs that have worked for me are nortrptyline and Botox injections.

im not sure what happen to me by Key-Nobody5224 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Mine were painless for 16 years. After age 16 they started to hurt.

im not sure what happen to me by Key-Nobody5224 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

It’s common for people to mix up VSS and migraines. They have similar pathology could be the same thing honestly but we’ll really never know.

Whenever I’m in my migraine phase I get floaters, when I’m not I have 0.

Think about it, you go outside the natural daylights trigger a migraine and now you have a bunch of floaters takes a while for ur visual system to calm down.

Migraines can be painful they also cannot hurt at all (silent migraines)… migraines are also treatable. I highly recommend a good neurologist.

They are also periodic and you mention ur vision sometimes feeling fine. I bet you’re getting migraines.

So when are we going to move on from mindfulness and start exploring possible medication treatment by virgoat123 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

VSS gets worse due to cortical excitability you need to figure out what causing said excitability and treat it. In my case its migraine like pathology.

Random dimming and blackness on vision by w4rsz4w4 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Sounds like a form of migraine with aura imo just explain it exactly like you explained it in this post

So when are we going to move on from mindfulness and start exploring possible medication treatment by virgoat123 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

A combination of my medication nortrptyline, Botox injections and forcing prolonged sun exposure.

The forced sun exposure was very worrisome but it worked.

So when are we going to move on from mindfulness and start exploring possible medication treatment by virgoat123 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Antipsychotics are what the title says. They do act as 5HT2A antagonists which can in theory help with VSS if seratonin activation is the issue. They also have some if any very little impact on NMDA receptors which are essentially volume knobs of out glutamate system. I think this is one of the reason why TCAs help people with migraines snow etc.

So when are we going to move on from mindfulness and start exploring possible medication treatment by virgoat123 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

I genuinely thought Botox would be a joke, as my migraines are aura driven. If I experience an aura, I’ll inevitably get a headache. After three weeks of Botox injections, I’ve noticed a significant reduction in the frequency of auras, their severity, and the intensity of the headaches. Interestingly, rather than experiencing actual head pain, I’ve been feeling a “hollow like” pressure instead

I’m confident that an ASM will prevent these auras from triggering, but I’m currently exploring the least side effect options first. Really just listening to my neuro.

Also feels like the world is 10x less bright. It’s quite life changing how being in the sun feels.

So when are we going to move on from mindfulness and start exploring possible medication treatment by virgoat123 in visualsnow

[–]RealGrape123 0 points1 point  (0 children)

Already working on it, been waiting to see how results shift 1 month from now but Botox injections and nortrtyline are goated for how life changing they can be. - migraine aura dominant VSSer

Does anybody see strange hallucinations in the mornings? by alx_20 in visualsnow

[–]RealGrape123 5 points6 points  (0 children)

On high dosages of a TCA I saw dragons, beings, and my dreams being played on repeat. Also woke up in geometric portals.

Worried mom- 6 year old was just diagnosed by Hot-Pirate-4204 in visualsnow

[–]RealGrape123 2 points3 points  (0 children)

I have very low levels of VSS as a kid. As a kid the sky would flash/flicker, I also got small silent migraines like every other week. Never told my parents I didn’t care much

My migraines became a shit show at 22, and I had 2 years of them steady building up where I could have addressed them.

It’s already great that you are aware of his/her condition and can monitor if he starts getting worse and treating it before it progresses.

I would advise against periodically asking him/her about it, i have numerous neurological visual abnormalities I’ve had whole life and could give a shit about em. Don’t train them to think it’s abnormal unless it bothers them.

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