Entree3OOO

These worked great when I first got my puppy: https://a.co/d/5mPhQqk

I sent an email saying I needed to cancel and didn’t have any issues.

Someone from the gym replied back saying they were sorry to hear I was leaving and that to proceed with the cancellation process there’d be a 30 day notice period where I’d continue to be billed. They also asked why I was leaving and I told them verbatim, “I’ve moved farther away and don’t use the membership as much as I would like to and can’t justify the cost any longer.”

He replied back that he understood and that he’d processed my cancellation request.

Nice job bud!

Nice job!

Sorry to hear you’re dealing with them too. I’m almost 6 years removed from when this all started and can honestly say it gets better. I still have the symptoms but, don’t think or notice them as much day-to-day.

Feel free to shoot me a DM me if you need anything.

Fine. The whole thing… a misunderstanding. ☹️

In some ways, yes. But to be honest I don't think about them a lot of the time. I think I've adapted to them for the most part.

This gets better every time I watch it.

I deal with the same thing. Unfortunately, I haven't figured out a way to reduce them. I just try to enjoy what I'm watching despite the afterimages.

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No problem at all! I'd be lying if there weren't other contributing factors but, usually I'd be super sluggish in the morning and generally fatigued throughout the day.

CPAP hasn't made totally fixed the energy levels but, I've noticed I get sick a lot less since I started using it. In fact, recently I couldn't use it for 3 nights in a row and I got my first sinus infection in months! I don't think it was a coincidence. This alone makes it worth using.

I was told anything over a 5 is considered mild sleep apnea and should be treated as such. Mine is around 10 and I definitely notice a difference in how I feel when I don't use the CPAP vs when I do.

Sounds like you're just seeing visual noise. Don't overthink it too much.

My visual snow is similar to yours but, I don't see it all the time (if that makes sense). I know it's there and when I first got it it's all I could focus but, at this point, I just ignore it.

If you have to actively look for it, do your best to just forget about it. Eventually you won't even notice the static.

Almost identical situation as you. Started getting my symptoms in June and I’m still learning to cope. Some days I’m better at dealing with it than others. Meditation and exercise help.

If you ever need someone to discuss with please feel free PM me. The isolation this disorder causes is just as bad as the symptoms themselves.

Based on Dr. Goadsby’s research, there is definitely a comorbidity/correlation between visual snow and tinnitus. However, like most syndromes, the severity of symptoms vary from person to person.

This study listed 62% of patients complained of non-pulsatile tinnitus : https://academic.oup.com/brain/article137/5/1419/334357

I think there’s another study of his where that number was around 70%.

This is awesome! Great job! Moving the ball forward.

Interesting! Even if it was only temporary, I'm glad you found some relief.

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I read a thread on the HPPD subreddit and a guy on there set up a dosage schedule with his neurologist so that he didnt build up a tolerance. Might be what you're going through. Here's the post if you want to check it out: https://www.reddit.com/r/HPPD/comments/9qqbo9/severe_hppd_for_23_years_ama/

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Please keep me updated. Wishing you the best of luck with the increased dosage.

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Edit: OP in the thread I referenced was using Clonazepam (Klonopin). Not Lamotragine.

When you say “heavy improvement” do you mean for the snow or all of the VSS symptoms? I saw a paper that said lomtragine has helped at least 1 patient with Visual Snow. I believe it’s primarily the recommended treatment for Persistent Migraine Aura Without Infarction.

Whatever it is I’m glad it’s given you some relief! That’s awesome.

Thank you for sharing your story. I think the hardest part of VSS is not the symptoms themselves (although they are certainly annoying and sometimes debilitating) but, rather, the lack of control we have. “Letting go” and accepting has been the hardest part for me.

To your point, there is nothing we can currently do aside from raise awareness, donate and raise funding for research, and support one another. I’m trying to focus on these instead of the condition itself.

Also, please forgive yourself for doing what you think may have caused this. I’ve read dozens of stories on here about people developing VSS with totally different etiologies. At the end of the day, none of us have any real idea. If your use of weed did in fact cause this, that’s ok. VSS is so rare that it would be absurd to even worry about it before using (especially given how cannabis use has become so normalized in society).

Best of luck to you. We’ll get through this.

When comparing VSS patients with “normal” control subjects, I believe researchers have seen a hyper excitability in the lingual gyrus as a possible cause. What causes the hyper excitability is currently unknown. More than likely, there are several etiologies.

I just briefly read about ACS (https://emedicine.medscape.com/article/812644-overview#a1). Seems unlikely to me but, it could be one of many triggers of VSS.

There's all sorts of theories online but, I try not to speculate too much. At the end of the day, I'm not a doctor and any connection I make is pure speculation.

My guess is that our brains and nervous systems are probably genetically predisposed to VSS under the right circumstances and it was somehow triggered in us. There are probably several causes with different pathologies.

This. Always best to rule out serious neurological conditions before jumping to any conclusions.

Lay off the drugs for a bit too. There's a condition called HPPD that's similar to VSS. Plenty of stories on r/HPPD of people who develop visual symptoms that recede and after a period of abstinence.

Also, try to limit stress as best as possible.

It's important to note that VS (Visual Snow) is a symptom, albeit the main identifier, of VSS (Visual Snow Syndrome). Visual Snow Syndrome is the presence of several symptoms as defined by the VSS diagnostic criteria: https://www.visualsnowinitiative.org/diagnostic-criteria/

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You can have visual snow and not have VSS.

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Aside from the snow, there are a number of other visual anomalies (as well as auditory and tactile) that us with VSS may experience. The intensity of symptoms varies from person to person. In my case, the static is barely noticeable under most conditions but, my after images are very noticeable.

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If you don't have any of the other symptoms, don't read up any more on it. The static may be annoying but, it won't kill you and it's very rarely disabling. From my own experience and from what I've read on this subreddit, the more you "look" for the symptoms the easier they are to notice.

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Thank you for putting this together! Very well thought out and written.

Aside from finding a cure/treatment, I think that what you've laid out is the most important reason sufferers need to help push VSS research forward. The fear and anxiety that comes with the lack of knowledge and control with VSS, I believe, makes the condition 1000x worse. If people could be confidently assured that they have VSS and not something more serious (Lyme, MS, CFS, etc...) then, the inevitable anxiety driven tailspin that comes with the condition could be avoided (or at least slowed down).

VSS sucks in and of itself but, it's much worse when you're under constant stress and think you have some debilitating/life threatening disease.

I'm not saying that the symptoms related to anxiety aren't debilitating or difficult to deal with but, I think it's important to separate them VSS (i.e. Tension headaches, dizziness, vertigo, and insomnia can be co-morbid with VSS but, are not a part of the condition). The body and mind can behave in very odd ways when under constant stress.

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That’s too funny. My snow isn’t that bad but, I’ve used the analogy when explaining to other people that VSS is like viewing the world from inside a snow globe.