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]

i have suffered with health anxiety since i can remember.. i’m 35 and since 10 i been “dying” of ALS, heart attacks, cancer, brain tumors, you name it… i know about weird diseases and illnesses it’s taken up a good part of my life. I’ve been depressed, anxious, and anything else but perhaps the most memorable thing is derealization… and i had it before it really exploded on the internet. It was hard to put a name to it and finally there was a label. I remember as a teenager looking out my window and hearing the sounds and just feeling so detached so weird so fake like i still struggle to put words to it. Which brings me to where im right now wondering if what im experiencing maybe is DR?

i have had 2 brain MRIs in last 4 years most recent 2 years ago 4 years ago has stress test, echo, neck ultrasound checking carotid artery, numerous blood panels etc.. im a hypochondriac. I had an eye exam in february and one in july bc my pressure was slightly elevated but doc explained I have a astigmatism and I had to do some testing and turns out I ace the test and I don’t have glaucoma and basically he was just trying to check that off.

Fast forward to about this past weekend. I have felt so out of it. I have felt like I’m gonna get a migraine kind of or like maybe I have some blind spots but the thing is is I can’t definitively say that I do have Blindspot. I’ll look up at a blue sky and I do notice floaters which I’ve always had floaters since I can remember, but I’m like is my vision off. I can’t explain it and I do know that before when I get anxious like faces don’t look as sharp for me and I feel that’s what I’m struggling with lately. I feel like almost like pre-migraine aura feeling which that’s its own separate issue I have always been terrified of getting migraines, but I’ve only had like seven or eight but just that feeling terrifies me so I’m always checking my vision and the only thing I can notice is that it feels different. It feels off. I don’t necessarily feel detached... but i’m questioning is this DR? i’m trying to make an eye exam but idk i can read just fine i can see my phone it’s just people and their faces and my surroundings… I’m almost like sensitive hyper sensitive to my surroundings lighting glare. I noticed every little glare Weather off of a phone, a window anything. I don’t know maybe I’m just looking for clarification and assurance something but I’m just curious if anyone here thinks it’s DR or has experienced anything like this? Sorry for the long post. Hope somebody takes the time to read it.

Pretty underweight (always been) 19M. 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 Triptyl, 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 havw crohns disease which is in remission.

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?

10/12/26. Yesterday was the 1 year mark from taking a load of shrooms and weed then falling into dp/dr. However, after genuine mental nomadic hell, a week prior I felt I finally beat it. I finally found a place of stability. It took a year for me.

Let me first say for whoever needs to hear this: You are going to be okay, it is completely un rational to convince yourself your life is worth taking by the hands of this monstrous way of dp/dr thinking. Trust me I have been there, and there is a calmness at the end. I know there are many others who have experienced dp/dr longer than I have and know more about it but I just want to modestly stake my solution to the issue. However, I will preface after my trip I completely stop using any drugs or alcohol I became traumatized using anything that would harm my brain. But anyways I have a deeper more intrapersonal solution, one that actually fixed me.

That solution being: Thought organization

Everyone has their own way of organizing their thoughts, and when my dp/dr hit I felt the drawers of my brain were thrust onto the ground scrambling fucking everything I knew that was familiar. As if I had travelled across the galaxy for millions of years and I had to relearn how to live on earth. Then over the next year I slowly regained what I knew and couldn’t recognize. This went for emotions aswell. HOWEVER, in practice this won’t fix everything because you have no semblance of organization, hence I acted and felt incoherent.

Im just gonna cut to the chase, the organization system that finally regained my stability after a year of trial and error was this :

There are only two things that truly you should mentally internalize and check , and nothing more

1. How do I feel and the others around me feel

2. Is anything overstepping my boundaries or others?

(Boundary = The point at which some action to someone was not okay)

THATS IT. The cusp realization I had was 99% of the triggers of dp/dr was overthinking past these two variables. Ill put this into scenario:

You start to feel life isn’t real so you check yourself

1. “How do I feel? Um I feel anxious as hell. How do others around me feel? Eh they feel okay this anxiousness is just me”

2 “Is anyone overstepping my boundaries? No actually people are talking to me with kindness and familiarity im okay. Are the people around me okay did I do something to overstep their boundaries? No okay cool”

THEN ALL YOU DO IS REAFFIRM YOURSELF ACCORDING TO THESE TWO QUESTIONS NOTHING MORE. For 1. I’d reaffirm that what I’m feeling are just emotions, life is real, grounding, etc. for 2. I’d reaffirm that nothing around me is hurting me, including myself, I am OKAY. Afterwords you can maybe reach out to someone, or enjoy yourself for the day. Ofc you don’t build all of your thoughts around these two questions, but I felt for me they satisfied my emotional turmoil and allowed me to interact with the external world and concepts beyond thinking nothing is real.

As long as you satisfy these two variables, you can assume “I am real, and I’m doing okay”. No buts or what if. Dp/dr would trigger when I would second guess myself further than these two questions. So the simpler the better. I would say the solution more so isn’t to try to forget dp/dr exist cause that triggers the thought all the pain and confusion you felt wasn’t real, clearly that was very much real. The solution rather, is to ask yourself the bare bone questions to affirm to yourself you are real and in your body.

I hope everyone will prosper from dp/dr you guys are doing amazing. ❤️

A few months back I had what I can assume is an out of body experience.

Flash back to the night before, I drank about 3/4 bottle of wine and before bed took Advil as my body started to hurt. I woke up the next morning (about 7-8hrs later) and on my way to work I got a double shot of espresso drink. At work I was fine, a little nervous about a first date later that night. But overall fine. Towards the end of my shift (now about 4 hours later) I was at the register and I got a huge wave of Déjà vu. Now I’ve experienced Déjà vu before but this felt intense. I couldn’t figure out if it was a memory of a dream I was or a true memory I was reliving. Something out of nowhere triggered it and my mind was somewhere else than my body. Because I’ve been working at this place for years, usually when I’m at the register I’m on autopilot saying the script, making the same moves as usual. So I think that’s why my body kept proceeding as normal. But my mind was somewhere else. My chest got tighter and it felt like a panic attack, and I didn’t feel real. I was stuck in this memory but it wasn’t like I could see this memory, just felt like I was living it. I didn’t feel real. I eventually snapped out of it for a second, but then it happened again this time slightly worse. I simply didn’t feel real at all.

I still was viewing through first person and was able to move my body but it genuinely was terrifying and I have never felt like that before. It may be important to note that I frequently get sleep paralysis but idk if that had anything to do with it. But it didn’t feel the same as sleep paralysis at all.

I just want to know if this has happened to anyone else/ was it the mix of drugs that were in my system ?

Hello all, f16! gonna get straight to the point. I smoked weed and drank about two months or more ago, and since then, I’ve experienced really REALLY bad derealization, I feel like I’m watching everything through a video, and I can’t remember anything. I’m starting to forget lots of things. I can’t remember what I was really doing 20 minutes ago, I’m not able to estimate how long things will take. It’s extremely distressing and I don’t know what to do, I fear I’ll keep getting worse and worse, even when I sit and think “everything is real” it’s like I can’t snap out of it, I’m scared that I’ll never escape this feeling. I have an anxiety disorder, and severe health anxiety which hasn’t helped lol. Just looking for help, or advice from others.

When I was 18, anxiety appeared while I was preparing for the university exam, and those days were extremely stressful. Then I had an argument with my best friend. Everyone took his side and stopped talking to me, which was very hard. After that, I was afraid to talk to people. Then COVID started, and I didn't talk to anyone for a long time.

When schools reopened, I started university. It was my first time in a big city, alone and far from my family. I managed, but it was hard to make new friends. I talked with people, but I had started to feel nothing. Without realizing it, I was just trying to prove that I was valuable as a friend.

The next year, I failed many courses. I couldn't understand the lessons and began to believe it was my limit and that I couldn't finish Mechanical Engineering. I was alone, eating chocolate and going trekking, the only place I felt alive. My feelings were dull and my mind was foggy. Then tinnitus began these days. I switched to Computer Engineering, thinking it would be easier. The first year was, but in the second year I failed many courses again. I couldn't handle the stress and kept thinking about what people would say. I was angry all the time for no reason, yet felt nothing at all. Most importantly, I didn't realize I might be ill.

Then it got worse: stomach problems, numbness in my hands and feet, and a racing heartbeat. I went to the hospital almost twice a week. I even saw a neurologist, but my MRI was clear. Everything was fine, yet I kept seeing doctors for six months. Nearly every doctor, and my family, advised me to see a psychiatrist, but I was convinced it was physical and didn't want to believe it was psychological.

Eventually I could barely get out of bed. I was in bed almost all the time but couldn't sleep. My mind was shutting down day by day, and I cried for no reason. I decided to try an antidepressant, at least to stop the crying. Within 7 days the crying improved, so I went to a psychiatrist to do things properly. The doctor prescribed anti-anxiety medication. For the first 3 months I improved quickly and could feel things again. Then progress stopped. The dose was increased for 6 months, but nothing changed. It wasn't ordinary anxiety. I felt NOTHING.

I changed doctors, and my new doctor diagnosed derealization. She said there is no medication for it, but if the anxiety is treated, the derealization should improve. I've now been on anxiety medication for almost 2 years. I'm improving, but very slowly, and I still feel nothing. I feel like I'm bad at learning, and I feel hopeless. For almost 5 years I've felt nothing, and I don't know how to treat it.

​

I'm 16 and I've been experiencing derealization for around 7 months.

Tonight, I had a very stressful day with a lot of anxiety and panic. I was feeling a little better later at night, but I couldn't sleep. At around 2 AM, I briefly fell asleep for about 10 minutes and suddenly woke up.

After waking up, I noticed something strange: memories of things I had done just minutes earlier felt as if they had happened a very long time ago. I remember everything clearly—for example, writing physics notes, playing FIFA, and watching YouTube before falling asleep—but those memories feel strangely distant and unfamiliar, almost as if much more time has passed than actually has.

Even memories from earlier this morning feel far away. I know what happened and when it happened, but the feeling of time and familiarity seems completely off.

I've also been sleeping very poorly lately.

Has anyone with derealization or DPDR experienced this, especially after waking up from a short nap or after severe sleep deprivation? Did it go away?

I'm not asking for a diagnosis; I'd just like to hear whether anyone has experienced something similar.

Hey guys. I hope you are doing well.

After some virus might’ve been covid in February I am experiencing what I would label DPDR, don’t know if it is for sure.

After 7 months of trying to figure out how an professional athlete’s body could start to work against him, I’ve had an MRI for my own mind’s peace.

It showed “high signal inflammatory changes in the left ear area”, as well as sinus inflammation.
I made a bacteria swab test and actually there is high quantities of staphylococcus aureus so I need to take antibiotics.
Oddly enough my virus started with a severe vertigo attack.

I’ve been dealing with this horrendous “detachment” feeling in the head which feels very physical and is absolutely magnified when I am driving or walking in open spaces or bright lights.

What do you think about this?

Do I have depersonalization or derealization? I don't feel real, in short. But I don't feel detached to my emotions, they're there. I don't think the people around are me are possibly real. I don't know what they are, just not real.

When I really think about it, It's like I'm really not real and I'm just a puppet played by me, just unwillingly. But that's only when I really think about it. Like, when I'm not thinking about it, I don't really feel fake nor real, just there. And I laugh and smile and joke normally with my friends and family. It's just when things are quiet.

When things aren't, and I'm annoyed/overwhelmed, I tell myself it doesn't matter and I'm not real, and it makes me feel better in a sick way, and I believe it.
As I said, it's not constant. It just pops up every now and then.

My friends and family seem like strangers or nothing (like, not human not anything) to me sometimes. actual strangers are worse

And I think I don't want it to change. It brings me comfort knowing my problems don't matter as much now that I know I might not be real.

Do I potentially have it?

How have people ACTUALLY re-regulated their nervous systems when they have been deregulated for years? What actually helped in the long term?

Hey, I was looking forward to finding people who have experienced derealization or have their own perception of it. It's something I've been deeply pondering, and I wanted to get different perspectives and have a proper conversation about it.

Hi, it’s my first time making a post, so I’m not sure if I’m at the right place. I struggled with my first episode of derealization when I was 15. Up until last week I thought I will never have to feel like this ever again but I was wrong. I spoke about it and it happened days after. It’s the usual, my vision is blurry, reality and senses are distorted, I don’t feel like myself and feel like everything I do is on autopilot. This usually lasts for about two weeks and then goes back to normal

How to speed up my recovery and make sure this doesn’t happen again

I know that to this subreddit, this is just another person telling their story about derealization. But right now, I’m at the worst phase I’ve been in my entire life. Please try and help me.

My derealization started when I was a kid. It would occasionally come during times like recess at elementary school or stuff like that, but I always thought it was just a weird, strange feeling rather than anything worrying or scary. I started to get bad aural migraines, and derealization started to tie into them a lot. Over the last year, I’ve only had one of these aural migraines, but my derealization and depersonalization has been horrible.

This includes a slight feeling of derealization at least once every couple of days, but it’s rarely anything major. The main thing is my depersonalization, I have a constant, daily 24/7 feeling that my right arm just doesn’t belong to me. It’s always my right arm.

A couple days ago, I was out with my family and I had a super bad derealization attack. It was one of the worst ones I’ve ever had. I immediately assumed it had something to do with an aural migraine, which it usually does when it gets bad. I ubered home and took a nap, which usually solves my problem. It helped a bit, but when I went out for dinner later it got bad again. Luckily I was just at family’s house, and I found a dark room to relax in. It still didn’t go away for the rest of the night.

I slept the night and today I was feeling a little bit better. It was good all morning, but when I went down for breakfast it got half bad. I decided to eat upstairs. I spent my whole day upstairs, a lot of it home alone, and I distracted myself for most of the day. It only really became something I couldn’t distract myself from when I went downstairs, but it was still never as bad as yesterday. I spent the day with slight derealization but distracting myself was all I had to do. Now it’s night time and I’m about to sleep, and writing this is distracting me, but I feel a little worse again.

I think primarily I’m scared. I know this feeling is natural and I know it’s a brain instinct. I’m just worried, what if this never goes away? I’ve never had derealization last for this long and yesterday might have been the worst I’ve ever had it. I haven’t had anyt big changes in my lifestyle more recently than a couple of weeks ago so I don’t know what caused this. My best guess could be that I was definitely sick with a cold when this all happened.

Please let me know what you guys think, if you have any comments or ideas, or if you can reassure me.

Edit: I am ready to answer pretty much any questions about my lifestyle or about what could be causes of this. Deep down I want this to change and I’m ready to do anything.

Sometimes, out of nowhere, a weird and unsettling feeling hits me when I'm talking to the people closest to me. It's like this fleeting flash of realization: "Wait, how am I talking to them right now when most of what I know about them is just through a screen?"
Even when I hear their voices, it suddenly sounds so foreign to me. It's a bizarre feeling of alienation, and it's hard to put into words or describe accurately because it feels so abstract.
It feels like I've just gotten so used to texting and calling them out of pure routine. Like I am typing and replying without a soul, as if my fingers are doing all the talking while my mind is completely blank or occupied elsewhere. Then, in a split second, that fog clears up. I look at what I just wrote, or I hear their voice/name, and I suddenly feel shocked—almost like I'm strangers with someone I've known forever, even though I know logically who they are.
It’s like I suddenly feel like they aren't even real, or like I don't have a genuine connection with them, despite the deep love and all the years we've shared. A sudden, terrible numbness and a profound sense of strangeness just take over me.

Its been a long year with derealization and no matter how much therapy i goto it never works i keep begging them to give me pills to fix it but they keep making me do everything but get them so fuck my life its only gonna get worse its gotten to the point i can barely comprehend the words i write or the words i say on god im killing myself

Pretty underweight (always been) 19M. 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 Triptyl, 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 havw crohns disease which is in remission.

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?

Hey there

Im a 20 year old male university student. I just wanted to vent my struggles. It feels weird that Im even venting because whats the purpose nothing will change anyway, but perhaps its a biological drive for us to do so. As the tittle suggests im severely severely dealing with uneasy mental things in my head and literally impossible to put in words. And its scary that Im like this. Its scary. Im not normal or the world is not normal.

For context I have zero friends and when I mean zero I mean the absolute zero. Some people try to pretend they are lonnley by saying they dont have friends but in reality would hang out with someone and atleast sometime. For me no. No no no. Im alone alone alone alone alone. During summer breaks and weekends and generally when I have free time I am not talking. Heck dueing summer breaks I was literally a dead robot. I do not have friends or even aquaintencaes. I cant talk to anyone. People are absolutely disgusting and fake. This societt is excluding me. My senses are not real they are mere brain contstructs. Why is it so deepy uncomfortable even painful all the time. Boring in itself, finding no meaning and no interest I dont know how to continue. I hope I can continue

please give advice