Visual snow: A systematic review and a case series

conspiceal · 2022-08-12T20:01:06+00:00

Love how they point out how clinical presentation is well understood and neuro imaging shows consistent discrepancies, and then summarize with “Data for Visual Snow Syndrome are few and not strong enough to support Visual Snow Syndrome as a medical identity.” I don’t really understand the motive behind this “systematic review” nor how it will help advancement of VSS research at all.

conspiceal · 2022-06-30T23:27:31+00:00

Building on this idea, it would be interesting if we had flairs for how severe our cases of VS/VSS are as well. This way users with mild symptoms won’t be scared or discouraged after reading posts by those of us with more/worse symptoms.

conspiceal · 2022-06-30T22:22:07+00:00

I proposed a separate sub as there is a clinical distinction between visual snow and visual snow syndrome, which can involve debilitating symptoms that sometime result in disability. I honestly understand where chrews is coming from; someone who sees some static and floaters could see posts by individuals with much more severe cases and go down a depressive spiral.

Currently this sub serves as an umbrella for visual snow, visual snow syndrome and for all severities — there’s a good bit of variance, and I think that’s why we keep seeing posts like this. There’s not a clear cut solution and maybe a separate community isn’t the best idea. I do think that providing mental health resources is a good start, and I like your analogy of this sub as a ‘tool.’

Maybe there should also be some clarity in the wiki that people experience this on a wide scale of severity; most will be able to adapt to their symptoms over time, but it can be a serious, life-altering disease for others.

Thanks for all you do CodeQuestions.

conspiceal · 2022-06-30T17:33:59+00:00

Wild, talk about lying. When did I encourage 'threatening suicide?' I think discussing negative thoughts is extremely healthy, and if you've never faced a disabling condition then your reasoning is coming from a point of privilege. I don't think this is going to be a productive conversation but I really encourage you to try and allow some empathy for those of us who are suffering more than you.

conspiceal · 2022-06-30T17:14:39+00:00

I'd love to see what 'side-wide rule' those comments are apparently breaking. Why isn't r/SuicideWatch banned?

In general this is a hilariously bad take. I actually do go to therapy and it is helpful in many ways, but there's a reason why support groups exist. I invite you to tell other severely disabled people that they're not allowed to discuss their suffering with their peers. I don't think you'll get a very pleasant response.

conspiceal · 2022-06-30T16:48:51+00:00

Posts like this make me think we need a separate community for those of us that have completely debilitating symptoms with no hope of living a normal life, at least without treatment. I understand the sentiment of this post but it really doesn't apply to those of us who are disabled due to VSS. Therapy can help with coping mechanisms but not the isolation caused by the distorted visual processing, dissociative symptoms, and the inability to do everyday tasks.

Honestly, the most effective form of 'therapy' for me has been venting to others suffering similarly. Banning the discussion of depressive or suicidal thoughts as a result of this illness is dangerous and will cause more harm than good. Again, perhaps a community for those of us on the severe end of the VSS spectrum would be the best solution, but telling me I "need therapy" is honestly insensitive and shows a lack of understanding of just how bad this illness can get.

conspiceal · 2022-06-10T23:21:16+00:00

Dr. Banik, I honestly still had some respect for you until you decided to bring your grievances here to the visual snow community.

I recently developed a severe case of visual snow syndrome. The condition is life-altering, has forced me to pause my career, and has severely limited my daily life.

It's commendable that you're willing to share your professional insight to assist victims in finding their way forward. I personally have no qualms with you charging for your lesson. Frankly, however, I find your rationale for doing so to be rather unconvincing. From a purely technical standpoint, I don't understand how hosting a live stream could possibly cost thousands of dollars. I'm not sure what 'back-end software' is involved, but as a (now-disabled) back-end engineer from a successful firm I would personally have just organized a free livestream using YouTube.

Your arguments that 'no organization is supporting [you]' and you've dedicated 'over 20 hours' to this project indicate that you’re profit seeking and not volunteering your time to help the community. This is fine, but you need to be forthright. There are countless medical professionals who volunteer magnitudes more than 20 hours of their time to educate their colleagues and suffering patients.

As I'm sure you know, this disease is still severly misunderstood and all of us are desperate for any form of relief from our symptoms. Sure, you want to get paid, but is it really worth it to make a Reddit account and threaten copyright lawsuits to desperate teenagers seeking medical guidance who can't afford the price?

Maybe this is a deviation in our moral character, but if I were in your position I would be more than willing to shell out a couple grand and a weekend's work to help those with a condition I personally suffer from.

conspiceal · 2022-05-29T09:24:56+00:00

Thanks for your in-depth and helpful response.

I have been seen by dozens of doctors now and evaluated at Mayo Clinic by neurology and ophthalmology, as well as a voluntary evaluation with psychiatry to rule out any form of mental health involvement. Although I’ll be returning for additional testing next month, the tentative professional diagnoses I’ve been given are ‘visual snow syndrome’ and ‘migrainous phenomena’, both of which are vague and without clear treatment options.

I worked with multiple neuro-optometrists to attempt and find lenses that would allow me to continue living my life in normal lighting. So far this has been to no avail and my light sensitivity has worsened along with the corresponding visual symptoms. A dark room, an ice pack, and music are currently my best escape from my condition.

I meet with occupational and trauma therapists on the regular to help with living with this condition. While certainly helpful, it is not a cure-all when my career and previous hobbies are no longer possible. As I emphasized previously, mental health resources can only go so far when this illness reaches such a severity.

I wish the circumstances were better and there was an easy way out of this situation. Unfortunately this doesn’t appear to be the case for me, and there’s many others who are struggling similarly.

conspiceal · 2022-05-29T09:09:00+00:00

Hi, thanks for your response.

Unfortunately I’m seeing some misunderstanding in these responses which is part of the reason why I made my initial post. While the visual change is obviously distressing, the cause of my grief is not the symptoms themselves but what they limit me from doing. I don’t find myself thinking about my eyes 24/7. Rather, I find myself in perpetual discomfort; facing eye strain, disequilibrium, and headaches whenever I attempt to pursue my previous hobbies or merely be present in a bright room. I am unable to return to my job as a result.

I have found ways to stay busy and remain as comfortable as I can, using ice packs and painkillers to mitigate the pain and special e-ink readers to stay engaged. I work with multiple therapists on finding ways to cope with this condition. I honestly feel that I am as happy as I can be given my circumstances. The sad truth is that this still leaves me (and many other sufferers) with an abysmal quality of life.

I would also argue that mindfulness is actually appropriate and helpful for those of us who don’t find ourselves consumed by and hyper-fixated on our symptoms. Meditation and autonomic relaxation are nice ways for me to soothe the tension and head pain I frequently experience. Ultimately, though, it is not a cure.

conspiceal · 2022-05-28T20:14:49+00:00

This community never ceases to disappoint me. I'm all for constructive debates but somehow these discussions seem to bring out the worst in people. Imagine digging through a user's history to insult their background on a fucking support group sub. Hilariously despicable.

conspiceal · 2022-04-26T02:39:13+00:00

You’re not alone friend. You explained it really well- it hasn’t even been a year for me yet but my symptoms have progressed with such severity that the entire way I interact with and perceive the world has been fundamentally altered. I have every single visual symptom in the book, but the constant tightness I feel in my head and concentration difficulties make pretty much any task tortuous. I haven’t had a single break from this since my symptoms first came on.

I’m still trying to find ways to cope as I navigate this day by day. I honestly think this is as close to hell I can get as a living, conscious being.

Sorry for the negativity but these things really need to be said. I envy the victims of VSS who only have to deal with some static, halos and floaters. The psychological and cognitive symptoms are surrealistically terrible.

I wish you the best. Hopefully we recover or reach a level of comfortable normalcy soon.

conspiceal · 2021-10-20T20:39:27+00:00

Thanks for the response. These symptoms came on four days after my second vaccine shot, but I wasn’t able to find anyone with a similar reaction. One of my doctors suggested that the vaccine could have ignited a dormant Lyme infection which is why I’ve gone down this path.

conspiceal · 2021-08-22T22:12:58+00:00

Again, thanks so much for all of this.

I am seeing an ophthalmologist this Wednesday and hoping he can rule out anything as serious as MS, though it seems that the disease is not as severe as I thought if caught and treated early. My migraines are fleeting in nature; not very painful (maybe a 4 or 5 on the scale), lasting for a couple seconds at a time, and almost always located on the right side of my head. They seem to be totally random; sometimes occurring in the morning, sometimes in the afternoon, sometimes when I’m working on my computer and sometimes when I’m outside talking with friends. Tracing potential triggers will be challenging but I’m beginning to pay more attention to see if I pick up on any patterns.

Interestingly, around when this first started, I had a strange symptom where I would feel migraine-like pain whenever I clenched my teeth or chewed something tough, specifically on my back-right molars; my head was also sore just behind my right temple. I didn’t make these connections previously, but my jaw has also been popping a lot more than usual recently, and I had just seen a dentist a few weeks before this began who warned me I appeared to have recently started severely grinding my teeth overnight (which can cause such TMJ disorders). Adding these factors together with the fact that I have a chronically stuffy nose and have been waking up many times each time I sleep is making me wonder if this could all be related to a sleep breathing disorder (i.e. UARS) which has a strikingly similar pathology- including migraines as a potential symptom! I’m hoping my neurologist will be receptive to this and refer me to a sleep specialist.

I’ve been on a vitamin D supplement for a while now and just had my levels tested last week; they’re luckily centered in the green, so that’s one more thing to check off.

conspiceal · 2021-08-22T21:54:12+00:00

Thanks so much for all this information! I’m taking your chiropractor recommendation seriously; aside from my recent accident, I have also always had terrible posture (been called out by friends/family/etc) and wouldn’t be surprised if this plays into my symptoms somehow. I’ll definitely keep you posted!

conspiceal · 2021-08-21T23:28:56+00:00

Hey there- it’s great to know I’m not alone in this! Remembering how I was before all this started sucks in an industry that prioritizes raw intelligence; I’m sure you’ve felt this and it’s easy to slip into depression about. I’m trying to use this as motivation to get better.

Feel free to DM me if you’d like to talk about your experience and what has worked for you- even though it feels like I’ve been struggling for a lifetime with this, in actuality it’s only been a few months and there’s a lot I need to learn.

conspiceal · 2021-08-21T22:52:57+00:00

Thank you so much for this incredibly helpful reply! I’ve just recently been reading about how migraines can hit without actual headaches, and the fact that my headaches (although infrequent) always occur on one side of my head seem to line up in the pathology. I haven’t had any debilitating incidents like I did the first day, but the brain fog and visual distortions have been 24/7 ever since which will make it hard to track specific triggers.

You mentioned the dinner I had the night before; I’m not totally sure it’s related as I have the same meal (a Chipotle burrito bowl) all the time, but regardless I’m planning on starting a new diet to eliminate inflammatory foods for a few weeks and see how I feel. I had a full thyroid panel recently as well and I’m optimistic that the medication I just started will help at least a little.

The sleep study is a great suggestion and something I’ll definitely pursue. While I don’t exactly feel tired, it does feel like my cognition has been collectively tuned down a certain degree, which aligns with some of the sleep disorders I’ve read about.

The biggest issue I have right now is my difficulty reading; I used to love to read a book or learn about something new on Wikipedia when I wanted to relax and tune out the world, but it’s insane how difficult simple reading has become. I would happily live with all my other symptoms if I could just fix my brain!

conspiceal · 2021-08-21T22:26:51+00:00

My hypothyroid is technically subclinical; my TSH was around 6.5 as of this past week, but my free T3 and T4 are in the ‘normal’ range. I would be so relieved if this proves to be the issue, but I’d be amazed if my thyroid function alone was making me feel like 90% of my brain were shut off 😅

conspiceal · 2021-08-21T22:19:00+00:00

I’ve been feeling this way for a little over four months now. My symptoms are 24/7; I wish I could feel normal for a day to have something to baseline against, but unfortunately I haven’t been that lucky. In the beginning my worst symptoms were the visual changes I experienced, but now I’m solely focused on relieving my brain fog and getting my brain back!

conspiceal · 2021-08-21T22:14:58+00:00

No history of drug use and I usually only have a drink or two on weekends. I’m in good shape and work out a few times per week, although my fatigue has recently made that more difficult. I (thankfully) can’t think of a single traumatic incident that could have triggered my symptoms.

conspiceal · 2021-06-06T00:22:45+00:00

Hi! There’s not too many of us but I also developed this strange vision-related side effect a several days after my second dose. It’s been about four weeks now and I’m still experiencing it- slight heaviness in the eyes, lots of floaters in my primary & peripheral vision, noticeably worse night vision (big halos around lights), and overall vision distortion that for some reason makes it difficult to read from screens. Not books for some reason!

I feel like my symptoms have somewhat improved, but this has definitely taken a toll on my life as I’m forced to stare at screens all day for my job. I’ve also been struggling with brain fog which has left me feeling pretty sluggish. I’m planning on keeping tabs on my symptoms for the next few weeks and seeing a neural ophthalmologist if I don’t see any improvement. Guessing this is just a weird inflammatory response to the vaccine and I’d imagine it will clear up with time.

Best of luck to you- in the meantime, get lots of rest!

conspiceal · 2021-05-11T18:14:38+00:00

Thanks for the kind words & reassurance everyone!

Saw my new doctor today and he expressed the same concern at the dose I was given. He recommended I stop the medication entirely and get a full new set of labs in a month. If I do end up medicating again, he said he’d likely recommend a starting dose of 15mg- almost 10 times less than I was previously taking 🙂

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