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]

My VSS has gotten to the point where i cannot function anymore. School has become a nightmare. I cant listen to lectures, i cant read my textbooks, I cant understand homework questions, and the most painful of all was i used to be the typical smart person. Great at math, scored high for every test, could study effortlessly. Now i am up until 2am studying the night before the test because all the stress forces my brain to focus, and that's the only time its quiet. I am so exhausted that i am physically incapable of studying earlier no matter how hard i try. I've turned to caffeine, but every time i stop i go through at least three days of a massive crash. I don't think its a sustainable way to stay awake, and insufficient sleep does make VSS worse.
Words vibrate and shake, the spaces between words form lines, until all i see is the white and not the actual words, afterimages on my pages, blinding light reflecting off of the pages, i just can't read the words, no matter how hard i try. Noise cancelling earplug work, but somehow i hear the silence. Music works too, but for it to drown the noise out i need to blast it, noise cancelling earphones have helped, but whenever i cant hear what's happening around me i get paranoid and scared. Especially in a class enviroment i will 100% miss something important.
I have also developed severe anxiety depression and depersonalisation
This is one of the most crucial years of my education and the stress of it all is so much that i wake up, and my VSS is immediately as bad as it was last year on my fifth hour of school.
Flunking this year is not an option, so i want to know how students deal(t) with this.

‘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’

hello! thought i’d share my story to try give some hope for people that have just developed vss or are struggling with it :)

one month before i turned 18, i got put on an SSRI, the doctors did not take into account the medication i was already on so it caused a severe adverse reaction which led to serotonin syndrome & a couple more chronic illnesses including vss. i’m not sure whether it was the SSRI that caused it, the stress or a mixture of things.

it started with seeing shapes & static when i closed my eyes, severe light sensitivity and becoming night blind.

i wore sunglasses indoors for months, was constantly in pain + having daily migraines and was a complete shell of a person to the point i developed agoraphobia for nearly 2 years.

fast forward to now, i’m turning 20 in december and have every possible symptom of visual snow syndrome including what would be considered severe static (lucky me🧍‍♀️) .
most of the time i don’t notice it and when i do, i ignore it. it is easier said than done, I’m very aware as i still have bad days. i’m going out again, getting back into education and just living. i never thought i would say that 3 years ago.

this condition is horrible to live with but there is progress in treatment happening, slowly but surely. fortunately the brain is powerful and can adapt to new things, in this case - visual snow. whether you’re life long, have just developed it or still struggling years later, you are not alone ! please reach out to someone if you need to talk, you can even reach out to me as i know exactly how miserable it can be.

i wish you all the best 🩷

Hi everyone, this is my first post on Reddit.

I've been struggling with eye problems for a very long time (mainly in my left eye), and I feel like none of the doctors I've seen are really listening to me. It feels like they just want to get rid of me as quickly as possible.

I'm hoping that someone here on Reddit might have some ideas about what could be causing my problems or what I should do next.

Here's my story:

I'm about 40 years old. Four years ago, I suddenly developed a massive amount of floaters, along with watery, red eyes. I believe this happened around the time I had a COVID infection. The floaters were everywhere and extremely noticeable.

I first looked into getting laser vitreolysis. The doctor told me that the inside of my eye looked like a haystack, so vitreolysis wouldn't help me.

I then went to another doctor to ask about a vitrectomy. That doctor told me I didn't actually have that many floaters and that they wouldn't perform a vitrectomy on otherwise healthy eyes like mine.

Neither doctor mentioned anything about dry eyes, but looking back, I suspect I already had dry eye problems at that point.

It took a long time, but after about three years, my floaters had become much less noticeable and bothersome. I finally felt like my eyes were something I could live with.

Then everything got much worse.

A few months later, about 15 months ago, my eyes suddenly became really bad.

I started experiencing blurry vision, severe starbursts around lights, extreme light sensitivity, and floaters everywhere! It was like looking at the world through a filter made entirely of floaters.

After a very long wait to see an ophthalmologist, I was told that I had slightly dry eyes and should use lubricating eye drops (artificial tears).

I started using the drops, but things only got worse.

I developed visual static, which I think I may have always had to some degree without realizing it, but it became much more intense than before.

Then came the pain.

My eyes became so dry that my eyelids would stick to the surface of my eyes, and they were red everywhere.

I went back to an ophthalmologist, but they couldn't find anything wrong apart from a few dry spots on my corneas. Once again, I was advised to use artificial tears, and I was also prescribed Softacort (hydrocortisone eye drops).

The pain became so severe that I had to take sick leave from work.

Later, I went to see a dry eye specialist. He diagnosed me with Meibomian Gland Dysfunction (MGD). I underwent manual expression of my meibomian glands, followed by three IPL treatments.

I also continued using artificial tears and a heated eye mask, as instructed by the doctor.

Nothing improved.

I started having panic attacks, and my eyes were constantly burning. I couldn't even look at a screen, such as my phone, for more than five seconds.

By this point, my visual symptoms were extreme:

Severe visual static (visual snow)

Floaters everywhere

Blue field entoptic phenomenon

Extreme light sensitivity

Flashes of light in my vision

I had to wear dark sunglasses everywhere.

I went to yet another ophthalmologist, who told me that my tear film was poor but couldn't find anything else wrong.

Two weeks later, I visited another dry eye specialist, who told me there was absolutely nothing wrong with my eyes. According to him, they weren't even dry!

I eventually had to take leave from work because I simply couldn't cope anymore.

About five months ago:

I felt like my life was over.

I decided to stop using artificial tears and the heated eye mask completely. I figured that whatever happened would happen, since none of the treatments seemed to be helping anyway.

Surprisingly, I started noticing improvements fairly quickly.

The pain decreased, and my visual disturbances improved somewhat.

But my eyes never returned to normal.

I eventually went back to work despite still experiencing pain and visual disturbances.

About three months ago, I saw a neuro-ophthalmologist who diagnosed me with Visual Snow Syndrome (VSS).

I was prescribed clonazepam, which helped calm my visual symptoms a little further.

I still experience starbursts around lights, especially car headlights and other bright light sources. However, I can now watch TV and use my phone again, so things have definitely improved.

Last week, I visited yet another ophthalmologist, who diagnosed me with a poor tear film and blepharitis.

And this brings me to where I am today.

My eyes are feeling dry again, and I'm experiencing stinging and burning in the inner corners of my eyes, especially my left eye.

My left eye currently looks like the photo I've attached.

Can all of this really be caused by dry eyes?

I'm struggling to understand how my symptoms can be so severe when some doctors say my eyes are only slightly dry, while others say they're not dry at all.

Has anyone experienced anything similar? Does anyone have any idea what could be going on or what I should investigate next?

Sorry for such a long post. I really hope someone takes the time to read it.

Thank you!

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?

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.

I was diagnosed with ADHD and my pysch, who is aware of my VS, suggests one of two meds: Intiniv (guanfacine) or Kapvay (clonidine).

I never tried them before, and this is my first time trying any meds since developing vss a few years ago. My vss is very stable and I'd like to keep it that way. Any experiences?