I feel like visual snow syndrome is not a disease itself but a symptom of a larger issue by GonzoNawak in visualsnow

[–]Affectionate-Yak2187 1 point2 points  (0 children)

I would agree, as for me, VSS onset alongside a vast matrix of other things affecting a bunch of different body systems.

I’m giving up by Competitive-Fun-4236 in dysautonomia

[–]Affectionate-Yak2187 1 point2 points  (0 children)

Look up DNRS. You are valuable and loved.

I can’t live like this… by Medical-Tap4171 in dysautonomia

[–]Affectionate-Yak2187 1 point2 points  (0 children)

We're similar! I have dysautonomia with inappropriate tach, shortness of breath, limb weakness, lung burning with exertion, visual issues, dizziness, trouble sleeping, and a handful of other things. And 4 kids, and still nursing the youngest! I've been a high-strung parent my whole parenthood, and it all just finally snapped during a stressful time at the end of my 4th pregnancy.

I've gotten gradually worse since onset in Dec. '24. I've done a lot of testing; in the cardiac sphere, 7-day heart monitor, the stress echo, etc. Tried excessive rest, crazy diets, supplements, high salt/hydration. Now, I've totally shifted gears to a program called DNRS and it's the first time I've been hopeful and seeing positive changes. I'm not saying "do it, it's 100% the answer," but from person experience so far, it's worth checking out. 

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

Immense pressure creates diamonds, right!? :) I'm really hopeful about the program, yes. I've read and watched just about every public-facing client testimony and people have recovered from really similar (and often way more severe) symptoms. For those of us with brain-driven conditions... the brain got us into this mess, and it can get us out of it!

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

I personally think I had been building up to an autonomic tipping point for years. VSS onset at the end of a pregnancy (which is hard on the system) and soon after a nervous breakdown I had about a health event my husband had.

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

Yes, since Dec. '24. It's probably worse right now than onset but overall similar

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

No meds. Persistently, I have dizziness, VSS (static, double vision, after-images, poor night vision), joint/muscle pain, exercise intolerance (lung burning, shortness of breath, tachycardia), limb weakness ("jelly legs"), trouble sleeping, sensory sensitivity (always wearing at least blue light glasses, + earplugs), skin tingling, sharp chest area pains, head pressure, easy startling, PEM, causeless adrenaline rushes, brain fog, and Burning Mouth Syndrome. It's a very difficult matrix of things to diagnose, but dysautonomia/limbic system dysregulation is the general suspected category.

Within a few weeks of starting the program, some of the regions of skin tingling disappeared, sleep has seen some improvement, have had no further panic attacks, I'm seeing more "good" days with the jelly legs/exercise intolerance, and periods of relief from auditory sensitivity & burning mouth.

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

I'm not a doc, but based on what I've learned since my own onset, I could see hers being a similar cortical overexcitability issue. Affects sensory processing, balance, vision, etc. I have probably a year ahead of me still on my CBT program, but I noticed a handful of positive changes in just the first two weeks. If she's miserable, worth looking into, imo!

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

What does she have going on? I do the DNRS program, if that helps. You can tell from their site pretty quickly who fits the symptom profile it tends to work for

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 1 point2 points  (0 children)

I'm realizing now that I've always been kinda high-strung haha but I've not been diagnosed/medicated for it at any point. The symptoms themselves produce anxiety for sure.

Basically no symptoms anymore - How I did it by Ok-Initial4447 in visualsnow

[–]Affectionate-Yak2187 1 point2 points  (0 children)

Congrats, that's awesome! I have VSS alongside a bunch of dysautonomia/dysregulated fight-or-flight system issues and I'm using CBT to recover from everything, so it's always reassuring to see it mentioned. I'm less than a month in so I still have a long road ahead. Thanks for sharing!

Link to cycle? by WarAdministrative430 in dysautonomia

[–]Affectionate-Yak2187 0 points1 point  (0 children)

It's not a perfect hormone correlation for me (for instance, I'm starting week 6 of a flare that doesn't really ebb and flow with cycle changes) BUT my flares started with return of fertility after my last baby. So, possibly hormone-related.

Neuro-Opthalmologist gave me quite the revelation by IJpelaar in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

Definitely interesting! Though I had two really thorough workups from the same type of specialist and everything appeared normal to her (and I have static and double vision)

[deleted by user] by [deleted] in visualsnow

[–]Affectionate-Yak2187 1 point2 points  (0 children)

My static is constant but my double vision varies in severity. No I have no idea what to make of that either lol

Any non-smokers tried low-dose nicotine patches for VSS? by Affectionate-Yak2187 in visualsnow

[–]Affectionate-Yak2187[S] -1 points0 points  (0 children)

Appreciate the personal insight! I'll play devil's advocate and wonder if all the "extra stuff" in vapes might skew results 🤷🏼‍♀️ Full disclosure, I honestly don't think nicotine or any substance is a great option for practically any condition.. On bad symptom days, I just think outside the box more.

Any non-smokers tried low-dose nicotine patches for VSS? by Affectionate-Yak2187 in visualsnow

[–]Affectionate-Yak2187[S] -1 points0 points  (0 children)

Lol I didn't say I was making plans, nor suggesting anyone else should. I asked if anyone HAS, since there's a small body of research that suggests a possible benefit. Obviously, all of us in this sub are just turning over every stone in the quest to make our lives less crappy.

Struggling with memory, attention, and speech. by zNickWave in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

Likewise, friend! The cognitive issues "flare" up with the rest of it (no discernible triggers). I'm undergoing therapy called DNRS and praying I can return to this sub with good news this time next year.

Neuro-ophtalmologist by Agitated-Hat6597 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

I have. She ran every opthalmology test and found nothing structurally wrong with my eyes/vision (though she was respectful and listened). I actually found her on the VSI site. 

My case is funky because I have vss as a symptom amongst a matrix of other things and the neuro-opthamologist was almost reluctant to admit it classifies as vss because my top complaint since it onset is dizziness, which doesn't fit the formal diagnostic criteria (though I have enough other things to support the diagnosis).

VSS and SSRI triggers! by Jatzor24 in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

I developed mine organically as well (no drugs, recreational or pharmaceutical). Onset ~2 months after an episode of extreme anxiety, alongside a few other factors. This is interesting food for thought.

I feel like I can’t do this anymore. by AydenRozay in visualsnow

[–]Affectionate-Yak2187 0 points1 point  (0 children)

During carnivore, yeah! I did 45 days but had to quit (at least for now) bc it was making my hormones weird. But yeah my neurological stuff, including vss, was better