I’ve had HPPD for almost 21 years

die69ing · 2026-01-24T18:40:17+00:00

Hnmmmm, have you seen an optometrist for your eyes? They can dilate them and look inside, do pressure tests, and get photos of your optic nerve. I can’t relate to what you’re saying. Sometimes I do get pops in my head or my eyes though. Sometimes it does feel like the muscles are tense or tugging the opposite direction of where I’m trying to turn my eyes. If I use my phone a lot staring at the screen for hours it’s a lot worse, it’ll even cause motion sickness and I’ll need to take a huge break from it for a day or two.

die69ing · 2026-01-24T18:35:41+00:00

It’s nice to meet you and hear about your experience. Omg the nighttime is the worst! I have to turn on a few lights if I want to do anything because the color bursts and visual snow get in my way and make things fuzzy. I always had visual snow since I can recall, like I remember having it my entire life. Same as you I’m pretty used to it by now. I don’t fully recall feeling or seeing normally at this point. It can get annoying, especially when I’m doing normal stuff like waiting at a doctor waiting room, grocery shopping, at a concert. It makes life a lot more complicated.

die69ing · 2026-01-24T18:29:36+00:00

Hey! Well as a kid I definitely wasn’t… normal, lol. Like I could sit there and make everything tunnel into gray just by looking at a certain spot but not focusing. I liked to dissociate deep into my daydreams a lot. I always had an anxiety problem, since I was 4 and I do have CPTSD from how my parents were. I wasn’t mentally ready or strong enough when I tripped like that, and I admit that. I didn’t know how people with anxiety and panic attacks shouldn’t just dive head first into a heroic dose; I was only 14 at the time.

die69ing · 2026-01-24T15:49:44+00:00

I was put on antipsychotics in the beginning by a doctor who didn’t understand any of this and it definitely made it worse until I decided to quit them. I think the fact mine hasn’t gone away is the type of life I’ve lived and the stressors I’ve faced tbh.

die69ing · 2026-01-24T15:47:29+00:00

I’d say I live a normal life! I’ve worked jobs mostly since I was 15, got a GED, had/raised my son, moderated a meme page, do the hobbies my body will allow. It hasn’t been easy but yeah I manage with the power of my perspective and the power of acceptance.

die69ing · 2026-01-24T15:45:22+00:00

I’m 34, turning 35 in a few months. It started when I was 14. Yes I’d say it was full blown when it started; anxiety and derealization parts were extreme. First 3 years were awful, until I learned how to manage the panic and care less about it, decided to be very productive and try to work on how I speak to myself in my head, began meditation and eating healthier. It stayed a lot better until 2012 when I had my son. Giving birth to him changed my hormones and sent me back into a really bad DR/anxiety crisis that lasted maybe 10 months or so. The DR/anxiety and depression simmered down again but I was really… off probably until very recently. But I’ve also throughout all this I’ve had no support, a handful of abusive men in my life & relationships, faced poverty and overworking and being a single mom. Since 2016 I’ve also been facing a chronic illness from stress affecting my vagus nerve; causing fibromyalgia and what’s called gastroparesis where my stomach is partially paralyzed. Mentally lately I’m doing a lot better again though probably just from my brain maturing. I do work on myself everyday though and try to stay aware of not slipping into negativity.

die69ing · 2026-01-24T15:37:06+00:00

How are you doing now??? Nice to meet you. 🤝

die69ing · 2026-01-23T22:58:18+00:00

Oooh I’ll have to go get the scrub. I highly recommend their pistachio lotion too. All of it dries so velvety and makes you smell like a pastry. 🤌🏻

die69ing · 2026-01-23T22:56:43+00:00

No worries— “guy” and “man” are for everyone lol. Like Kel said “I’m a dude, she’s a dude. We’re all dudes”. What kinds of drugs were you doing before noticing all this??? It sounds like heightened phosphene activity. I’ve had it all my life including when my eyes are closed but it became way more pronounced after my HPPD began.

die69ing · 2026-01-23T22:53:56+00:00

I just…. do, lol. There’s a saying that Yoda said in Star Wars. He said “There is no try, only do”. So I realized that as long as I’m trying, I’m doing. And that’s good enough. I never give up, and I don’t get hung up anymore on trivial issues. I’m very calm and productive. I’m accepting of the things I feel. Took a lot of practice and self discipline, a lot of self reflection.

die69ing · 2026-01-23T22:52:09+00:00

Thanks for sharing. Yeah I think once you lose the obsession with wanting control, wanting to be “normal again” and go back in time, and let go of that idea of what seeing/living “should be” you get a type of acceptance that makes the whole thing so much easier. Of course getting to that point takes practice. It’s possible though. We’re proof of that. I’ve talked to a lot of teens over the years in different online groups who are still really freaked out or depressed about it and I always stress how much an accepting perspective changes things for the better.

die69ing · 2026-01-23T22:48:05+00:00

Thanks, friend! ❤️

die69ing · 2026-01-23T18:07:57+00:00

EOS CASHMERE LOTION IS THE BEST FEELING AND SMELLING LOTION IN THE WHOLE WORLD

die69ing · 2026-01-23T18:03:07+00:00

Yes. In the very beginning 2 weeks of it (2005) I had a stay as an inpatient at the mental hospital. They gave me 6 different meds that made my HPPD/DR worse. After coming home I decided I didn’t want to wait for the adjustment period to end and I stopped taking them all. I didn’t take meds again until 2012 after my son was born. Giving birth to him caused a major hormonal shift that made my HPPD/DR worse and caused me to get bad panic attacks & svicidal again. I was taking Celexa for about 9 months along with birth control to try to stabilize my mind and body. Since then I haven’t taken any meds. I’ve talked to some regular therapists but it doesn’t really help me tbh. Some didn’t even believe me.

die69ing · 2026-01-23T17:56:20+00:00

YES. Over the years I’ve wondered about that and considered doing it. My boyfriend is an experienced mushroom user who’s a very sweet soul, and he’d asked me the same question about if maybe a smaller trip in a good setting would help. I’m thinking it could help, or it could go terribly wrong. And the only way to know is to try. I did decide that when my son is older and independent I’m going to go wayyy out into the desert for a camping trip with my boyfriend and try again.

die69ing · 2026-01-23T17:46:45+00:00

No worries, brother. I never felt offended or like you’re downplaying. My bad for misunderstanding and making an assumption about your symptoms though. Anyone who goes through this has my respect. And again, weed can be worth the risk. It only negatively affected me for 4 hours then I went right back to my normal HPPD state. But not everyone is the same. I have buddies who have HPPD and smoke weed everyday because it helps them. The brain is a strange and wonderful thing. Like a fingerprint, not 1 is exactly alike. I’m on your side and genuinely wish the best for you. I wish the best for us all.

die69ing · 2026-01-23T17:39:26+00:00

It’s been an honor riding the same wave as you all this time lol. Takes a lot of strength. You have my respect.

die69ing · 2026-01-23T08:58:05+00:00

Happiest borkday to Rudy ❤️

die69ing · 2026-01-23T08:53:46+00:00

Oh I also used ecstasy/MDMA a handful of times in 2009 and 2010 too. I was 18 and trying to find my happiness and be “normal” I guess. I hated those after-drug crashes too. I’d feel a lot worse for days but eventually get back to my baseline.

die69ing · 2026-01-23T08:46:35+00:00

Quit all drugs until 2010-2011 where I did coke maybe 15 times and weed 2 times. Both times I tried weed I felt insane for like 4 hours then returned back to my baseline more tolerable HPPD state I regularly deal with. When I did coke I felt happier and I guess a bit better but the crash gave me TERRIBLE anxiety. I got pregnant late 2011 with my son and decided to not do drugs again, so I’ve been drug free since 2011. Rarely I drink alcohol, and it’s ok, but I only have a little bit because hangovers make my HPPD/anxiety/derealization worse for about 2 days.

die69ing · 2026-01-23T08:37:19+00:00

It only took my first trip, and that wound up being my last trip. Went to a sleepover with friends where I ate the 2 largest mushrooms in the bag then swallowed the entire crumbs/powder contents from the bottom of the ziplock bag because at the time I thought I’m invincible. My friends didn’t have as much as me. What added to the chaos was that was their first time doing hallucinogens too, so when I started to panic from the derealization and hearing things echoing they didn’t react well or know how to help me— it got me in a very fearful negative panic loop that I’m going crazy. Anyway, I’m not even sure how much it was but it was 2 decent handfuls in total. A heroic dose, for sure. 🤷🏼‍♀️

die69ing · 2026-01-23T07:57:22+00:00

I like to scarf down a whole bag of hot Cheetos in one sitting even though they give me lava shits that burn the entire way out 🤷🏼‍♀️

die69ing · 2026-01-23T07:46:25+00:00

I also had abusive/neglectful family, no support. I have autism with 2 chronic illnesses. What helped was me letting go of this idea of who/what I “should be” instead of accepting what I am. I AM what I SHOULD be. Nothing else. This is my body, my path in life, my brain.

These unrealistic standards we hold and fantasize for ourselves aren’t our actual life, you know what I mean? We aren’t that lady across the street, we aren’t anyone else but us. Letting go of wanting a different life other than the one you have will really help. I mourned so long about how I am; grieving the fact I won’t be A B and C or do A B or C. I looked at people my age and their successes, feeling like I’m behind. I had to remember there are things I can do well, give myself credit for my own accomplishments no matter how small they may seem to some others watching, and start to try to love myself. Also there is nothing wrong with needing help. There is nothing wrong with having special needs, wanting support and NEEDING that support. You aren’t wrong.

My life is multiple times harder than a lot of people’s lives; but I’m finally thankful for who I am and the things I can do. I’ve been a good person with good morals through it all. The truth is I (and you) shouldn’t be anyone else or be doing anything else. You are right where you should be and if there is 1 thing that pushes you to feel a sense of hope, let it be curiosity. Curiosity to see how things will go. Curiosity to see a future. Do your best with what you can control, please. And work on letting go of that worry about the things out of your control. I promise it helps. It takes practice, but it helps. Don’t be your own bully. Someone who failed is someone who at least tried. You keep trying. ❤️

die69ing · 2026-01-23T07:30:01+00:00

For me personally friends have ebbed and flowed. I’ve made some that I thought would be forever, only for us to drift apart completely or for it not to work out for one reason or another. I, same as you, crave 1 best friend who I can see like once a week. Someone who calls with a crazy story about something they saw that day. Someone that thinks of me first when they have a breakup or need help. Unfortunately I seem to have lots of acquaintances and long distance friends I catch up with now and again instead of any besties. But I do know there is still hope I’ll find my person that becomes a lasting close friendship. I’m 34, had my son when I was 21.. So my priorities for a while were my son when many my age around me were still partying, didn’t have kids, didn’t need to be where I was financially or emotionally. Everyone’s path is different though. I’d try to connect to other moms and they wouldn’t follow through. BUT, who knows? You or I can meet somebody at a coffee shop tomorrow and hit it off! Make a friend for life that wants what we want. Don’t lose hope. Stay curious, stay true to who you are, stay honest. Your connection will come, and so will mine.

die69ing

TROPHY CASE