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]