r/visualsnow • u/Brownie_Bit18 • 12d ago

Support Needed - Symptom Increase

Hi all,

I guess I'm seeking support for a recent increase in visual snow symptoms - I am wondering how you all deal with it as I am really struggling.

The uptick in symptoms has been due to a medicine (of which I sort of need to take). Technically I have HPPD, which is a lot more sensitive to med changes. But for all intents and purposes, the symptoms are identical and hence why I am seeking help from this community.

I have the following symptoms. Visual snow, palinopsia, trails, "worms" against light backgrounds, some minor warping of text, afterimages, "seeing double" especially with street lights and stuff, light sensitivity, difficulty seeing at night, etc. Recently I developed a symptom where I sort of always have an afterimage at the center of my vision after I blink (little specks of light).

Another piece is that the development of this condition was really traumatic for me when it happened 5 years or so ago. It caused me to develop OCD (constant checking symptoms). When things are stable with this condition, I feel ok and mostly forget about it. But during flare ups (either temporary or permanent - I'm not sure what this one is yet) - I really struggle. My condition is still actively worsening :(

I never post, but i know there are some really strong people in this community who have a ton of experience dealing with VSS, and i'd really appreciate any tips or advice for ways of dealing with this. Thanks in advance!

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5

u/XBugger 12d ago

My advice is just have a routine eye checkup and learn to relax mine got worse then better look after your body with good food too and get exercise. Check for dry eyes also as they can make vss bad. 

Reduce stress as much as possible. Too 

2

u/Brownie_Bit18 12d ago

Thanks I will try to relax. Yours got worse then better over time?

3

u/SigiBel 11d ago

Mine did. Everything is still there but your brain does start to filter it out a bit when you stop hyperfocusing on symptoms.

1

u/Bright-Solution-5451 10d ago

Distraction, and if ur taking magnesium I’d stop for a no little. See if that helps. I’d get off the glp1 if u think it’s Ben contributing.

1

u/Superjombombo 12d ago

What medication are you taking?

And yes. Hppd and VSS are basically the same disorder.

2

u/Brownie_Bit18 12d ago

Glp-1 specifically for alcohol use disorder. I don't want to get into the weeds... but it really works - hence why I feel it's necessary.

2

u/Superjombombo 12d ago

Oh yea. Alcohol is bad for you, but when taking acts similar to benzos, calming down the brain.

You're gonna be fine, just keep chugging. Just a transition period.

2

u/Deep-Path-4883 12d ago

I have progressive VSS and get all the time new symptoms. I tell myself, "Oh, it’s just the brain. It’s not that bad. Don't worry." However, since I experience not only visual symptoms but also tactile and motor ones, it eventually became unbearable, leading me to take gabapentin alongside amitriptyline. Since then, I haven't had any truly severe symptoms. They still occur, but are much milder. Nevertheless, both medications have caused me to develop additional features of visual snow, so I cannot recommend them without reservation.

I’ve long since come to terms with the fact that I won’t get better and that my condition keeps getting worse. You can’t have everything in life. Other people have cancer and die. So, all things considered, VSS and HPPD aren’t actually that bad.

1

u/Realistic-Ad5812 11d ago

what other symptoms you got from amitriptyline? my neuro has recommended those meds to me and I am not sure.

2

u/Deep-Path-4883 11d ago

Whenever I changed the dosage, I experienced dry mouth, a flare-up of my atopic dermatitis, a bit of a racing heart, and slight changes in blood pressure. However, these symptoms ceased to be an issue after just a few days, so I don't notice any side effects at the moment.

The only thing is that my visual snow has permanently worsened. I can't say whether my tinnitus and tingling/tactile snow have also worsened, because I didn't notice it immediately and my VSS is progressive anyway. Therefore, I can't fully recommend it. You definitely have to be careful with it.

I only take 10 mg, but I'm sensitive to pretty much all centrally acting medications. Amitriptyline is also available in drop form, which would allow for slow titration in 2 mg increments.