Hey everyone,

I am 17 years old, turning 18 soon. My life is completely ruined by VSS, HPPD, and DPDR. if you happen to read this and think "what does this have to do with migraines" vss and hppd are like the biggest causers of migraines, I cant even be in my own room or glance at a light for a second without a horrible headache so by helping with this you're helping yourself possibly.

Every waking second of my life is hell and spiritual suffering that nobody else can see. My brain is flooded with heavy visual static, neon colors, bright halos around lights, tinnitus, and extreme sound sensitivity. My filter for background noise is turned ALL the way off. I am doing horrible in school, I cry every single day, and I can barely go outside anymore. I wanted to work at NASA, but now I feel like my life is over before it even began.

I am sick of sitting around waiting years for a machine (rTMS) that is already built and deployed in clinics right now. The research out of the University of Colorado Anschutz shows it works to calm the cortical hyperexcitability. The only thing holding us back is a timeline and how fast they're moving.

If we flood their inboxes with our stories and remind them that our combined subreddits have over 100,000 subscribers ready to hand them money, they will have to look at the financial demand.

Please take a couple minutes to copy the emails down so that we can make the change sooner. it would save my life and many others.

first is the FDA

Send To: [AskOICE@fda.hhs.gov](mailto:AskOICE@fda.hhs.gov)

CC: [CDRH_PatientEngagement@fda.hhs.gov](mailto:CDRH_PatientEngagement@fda.hhs.gov)

Subject: URGENT PATIENT APPEAL: Fast Track rTMS for VSS and HPPD

this is the letter to copy

To the FDA Office of Industry and Consumer Education,

My name is [Name], I am [Age] years old, and I am contacting you to beg with all of my soul for immediate regulatory intervention and more urgency regarding a health crisis affecting millions of people worldwide.

I live with Hallucinogen Persisting Perception Disorder (HPPD) and Visual Snow Syndrome (VSS). These are devastating, non stop neurological filtering disorders. Every waking second of my life is hell. My brain is flooded with intense visual static, neon colors, bright halos around lights, tinnitus, and horrible sound sensitivity. My brain has entirely lost its ability to filter background noise, turning every single day into a waking nightmare. It completely takes away our quality of life and affects sanity, friendships, and life itself.

I need to make it clear that HPPD usually comes with a condition called DPDR (Depersonalization-Derealization Disorder), which completely disconnects you from your body and the world around you. This is detrimental to our lives. I read an article that said 72 percent of people with dissociative disorders attempt suicide because it completely takes away your quality of life. We are losing our lives and sanity.

New data from the University of Colorado Anschutz Medical Campus proves that targeting cortical hyperexcitability via repetitive transcranial magnetic stimulation (rTMS) is a safe and viable way to stabilize and maybe even cure VSS and HPPD. Because rTMS machines are already widespread and deployed in clinics for depression, the machines already exist. We are just being held back by a timeline.

I am desperately urging the FDA to aggressively utilize its breakthrough devices program to fast track status for rTMS clinical protocols for VSS and HPPD. There is a massive online patient network, including over 100,000 combined subscribers across the r/HPPD and r/visualsnow subreddits, full of consumers whose lives are completely on hold, ruined, or in some cases ended. We cannot wait until 2032 or longer for a machine to be upgraded that we already have widespread. Please help to save our sanity.

Sincerely,

[Name]

the other targets are BRAINSWAY & MAGVENTURE

Send To: DeepTMS@brainsway.com, info@brainsway.com

CC: [info@magventure.com](mailto:info@magventure.com)

Subject: Unmet Market Demand: Fast Track rTMS Protocols for VSS and HPPD

Letter to Copy:

Dear Clinical Research and Business Development Team,

My name is [Name]. I am [Age] years old, and I am writing to bring to your attention a massive entirely untreated or even glanced at condition that represents a great financial investment for your company.

I live with HPPD and Visual Snow Syndrome (VSS). These are devastating, non stop neurological filtering disorders. Every waking second of my life is hell. My brain is flooded with heavy visual static, neon colors, bright halos around lights, tinnitus, and extreme sound sensitivity. My filter for background noise is turned ALL the way off. I can barely focus past the background noise and blaring headaches. HPPD also comes with DPDR (Depersonalization-Derealization Disorder), which completely disconnects you from your body and the world, ruining personalities, friendships, and sanity. I read an article that noted 72 percent of people with dissociative disorders attempt suicide due to this severe lack of quality of life.

New data from the University of Colorado Anschutz Medical Campus has proven that targeting cortical hyperexcitability via rTMS is a safe and viable way to stabilize and maybe even cure VSS and HPPD. As the device manufacturer, you are sitting on the solution. The machine is already built and deployed; what we are missing are the protocol settings to target the visual cortex and temporoparietal targets.

To give you an idea of the immediate market, this is fantastic for you financially. On Reddit alone, the r/visualsnow and r/hppd communities have over 100,000 combined subscribers begging for a fix. This would be incredible for you financially. By aggressively backing trials or fast tracking a protocol update for VSS/HPPD, you can position yourselves as the undisputed global leader and first to market provider for a massive, desperate, suffering population. You would be heroes to thousands. You already have this hardware manufactured, so please consider fast tracking to get them to save more people.

Sincerely,

[Name]

If you dont know what it is, misophonia is when you get fight or flight responses to certain sounds, meaning some sounds are "physically" painful. I got curious if maybe theres any correlation? Since I suffer from both.

‘Visual snow syndrome (VSS) is not considered a classic progressive neurodegenerative disease (like Alzheimer's or Parkinson's), though some patients may experience a shift or mild accumulation of additional visual symptoms over time’

Hi all, yesterday my 7 year old son informed us that he can see atoms, at first we thought maybe floaters (I have floaters and astigmatism), but on further discussion it doesn't sound like this as he explains the dots are what everything is 'made up of'. So for example the dots on my face are face coloured, the dots on his wall are the same colour as the paint etc. He said he has always been able to see them.

We have made an opticians appointment as first steps but from reading (mainly on this sub), it seems there isn't a totally clear diagnosis pathway on the NHS - we are in the UK.

I guess my main question is to parents of other children in the UK who have expressed similar - how did you go about getting a diagnosis? Were children offered MRIs? Having personally had an MRI for other reasons I know my son would really struggle with this!

Also, he has none of the other symptoms that I believe you need for a VSS diagnosis (as I understand from my basic research!), so is it right that someone can have ongoing VS but not VSS?

Thanks in advance from a confused parent!

(Also to add I have terrible medical anxiety so please no terrifying comments to send me into a spiral if possible!)

underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptans which is migraine medication, but it did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also have crohns disease which is in remission. My blood pressure and blood sugar is normal

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

I only discovered VSS a few years ago even existed but have had it my entire life and I am 51. I used to ask about it when I was a kid, but no one understood what I was talking about and dismissed me. I assumed everyone saw the same and just didn't understand what I was asking. I see the static and it is like countless flickering points of light that seem to paint the visual image of this world. The lights seem to flicker, so I came to think when I was in high school I was seeing electrons. When I was a young teen I noticed at night that there was other movements in the lights and wondered what I was seeing. The movements were swimming around and I actually used to wonder if I was seeing angels! As I got older the movements started to spin more and now I see a spinning wheel of light in front of me at night, I mostly only really notice it when I meditate. I do see floaters during the day and other things moving through my visual field now and again, but it is blurry and can't say what it all is. I get a lot of glare and halos at night and sometimes lights that also interfere with my vision a bit. During the day I need sunglasses as I am very light sensitive. Ive suffered with severe migraines since I was 28 and also started experiencing vertigo when I was 35. I did everything under the sun for years to try to relieve my symptoms without success. I started practicing posture correcting yoga for the migraines when I was 40 and after a couple months I saw improvement so I continued. After a few years of yoga 30 min a day I was amazed that my migraines backed off considerably as well as did the vertigo. I still have the visual snow though, but I understand many people experience migraines and vertigo with VSS.

I understand it is a neurological disorder and I wonder how did we all acquire VSS. When I was 2 I was electrocuted and have wondered if that was the cause of my injury. I stuck my hairpin into an electrical socket and my mother said she was so scared when she saw me she kicked me off the wall as a reaction. My hand was only mildly burnt and I was told I was very lucky my injury was not more severe. I am not sure what else may have contributed to my VSS.

I am fascinated to learn more about VSS and other peoples experiences.

So how far have with gotten regarding vss research? What have we found out so far about vss? Do we know the pathology yet, and have we found out anything new that can help reach our goal of finding a treatment?

I’ve had VSS my entire life and normally I barely notice it, but recently it’s been hell for me. I like to play video games at the end of the day in my free time, but I haven’t been able to because the static has been so much worse recently. It’s giving me headaches. Does anyone have any tips to help deal with this? I’m thinking that it’s probably getting worse because I’m stuck with an insanely outdated glasses prescription right now until my new ones arrive.

I've had VSS since as long as I can remember. As a kid I would star at the dark spots of my room and think I could see the air and humidity, lol.

I'm 38, and have been experiencing these glowing "orbs" in my peripheral since 2024. its almost like pacman where 2-4 of them follow the same track, usually one eye they go up and the other they go down. it lasts usually 3-5 seconds then goes away. I notice it more when i smoke, am extremely stressed, nervous or anxious — sometimes it's timed when my heart drops due to excitement, nerves, etc.

when it happens i can still see them even when i close my eyes. I've had multiple retina exams and nothing wrong with my retina or optic nerve.

Does anyone else have these? Here's a rough mockup, its usually one at a time but they appear and follow the same path up and or down my vision.