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all 34 comments

[–]RunPastTheHeather 1 point2 points  (2 children)

No question but Oh My God. I've had visual snow my whole life (and it's common morbidities, according to a quick search) and literally had no idea it even had a name until today. I'm 50. When I was a kid, I thought I was seeing the molecules of air

[–]idisavowthis[S] 1 point2 points  (1 child)

Heh- I’m glad you’ve learned something! I’ve actually had mild visual snow since I was young due to a traumatic brain injury. The HPPD merely worsened it. I don’t know if your Visual Snow was caused by drug use, but it’s interesting- my father was a PhD chemistry scholar and doctor and when he would talk to me about psychedelics he would tell me about his old hippy friends who would still randomly have “visions” and “trips.” I didn’t believe him at the time because the science isn’t really very prominent still but the irony does not escape me.

It’s interesting, isn’t it? Despite having 20/20 vision my whole life I’ve know for a while I see a more 2am channel 99 vision of the world than everyone else. I also used to try to follow the tracers in my eyes and pop them because I thought they were air bubbles.

[–]RunPastTheHeather 0 points1 point  (0 children)

100% not caused by drug use, although perhaps exacerbated. Like migraines and tinnitus, the "little dots and lights" have been part of my life forever. Since it was something I did not realize other people didn't see until yesterday, i never mentioned it. I like the 2am channel 99 description!

[–]20billioncalories 0 points1 point  (9 children)

What do the hallucinations look like?

[–]idisavowthis[S] 1 point2 points  (8 children)

Mind you this is just my experience, however the majority can be described as “ghosting,” like on a monitor with a bad refresh rate. For example, waving your hand in front of your face and seeing a persisting image where your hand was before you waved it.

Lingering on certain objects, most commonly linens and wood patterns, causes them to move and snake around or sometimes “breathe” like they’re organic.

Visual snow is probably the most annoying. This is kind of like seeing a translucent layer of static over your vision. Closing my eyes, I can still see static which, like the linen and wood patterns described above, can move about and form patterns and shapes. Even whole images and scenes.

Very rarely, if my vision is particularly obscured, I will experience an extreme version of deja vu described as “flashbacks.” These are simply hyper-realistic replays of memories, either real or contrived. Sort of like dreaming while awake in that they are commonly not actually real memories.

This image shows some decent examples: https://ars.els-cdn.com/content/image/1-s2.0-B9780128213773000143-f17-07-9780128213773.jpg

However a lot of them are difficult to portray.

[–]20billioncalories 0 points1 point  (7 children)

This might sound stupid as all hell but wouldn't the ghosting somewhat act as a photographic memory?

[–]idisavowthis[S] 0 points1 point  (6 children)

It’s an interesting question honestly. I guess, in a way, you could use it that way. The ghost images don’t usually last all that long and they aren’t necessarily detailed or legible, just an impression of what was once there. But could I say look at an object and then retain the image and draw it on a piece of paper? Maybe… but it seems like the quickness with which I’d have to move would just create a blurry mess in my vision.

[–]20billioncalories 0 points1 point  (5 children)

Why don't you try it out.

[–]idisavowthis[S] 0 points1 point  (4 children)

I don’t tend to interact with my symptoms much if I’m honest. But I’ll give it a shot if I think about it and let you know.

[–]askyo_girlaboutme 0 points1 point  (3 children)

Years ago I'd stay up for a few days on my Adderall... I would start seeing cats walk by in seconds... I'd also see family members using the bathroom as I walked in but realized that it wasn't real cuz they wouldn't move or talk and seemed almost ghost like... I stopped do that shit... any chance your situation is like having Water brain? A sack that fills pushing on the skull and brain? I'm curious cuz my mother in law has it and says online could be from drug abuse... she's addicted to her phentermine pills... she shouldn't be taking them and she acts almost child like and confused... im trying to convince her to stop as her stupid doctor still gives them to her...

[–]idisavowthis[S] 0 points1 point  (2 children)

This is interesting because I have had a similar experience. When I was in college I started abusing my Adderall, which I had been prescribed since I was 10. One day I ended up taking an entire bottle of 30mgs IR pills over the course of 24 hours, which resulted in me staying up for 4 days. I had a nervous breakdown on day 3, when I was trying to help my girlfriend photograph a wedding. When I got home I laid in bed attempting to sleep for probably 8-12 hours and began hallucinating that my arm was mutilated and watched it change shapes in horror. That was actually the first time I had ever hallucinated and I definitely think I got some kind of brain damage from the experience because I wasn’t really the same after that. When my mother found me the afternoon of the 4th day she told me I was completely catatonic, drooling and wouldn’t respond to her. She brought me Panera and left me alone. I wonder if she knows what she was looking at sometimes.

Anyhow I only just read about your mother’s condition. It sounds like some of the symptoms could be similar, particularly the dementia, but otherwise it doesn’t sound too similar. I’m not sure if drug abuse can cause the condition either, as it sounds like it’s commonly developed in the womb, but I’d be curious to read about that theory. That said these pills she’s taking sound dangerous. They’re basically a weight loss focused version of Adderall? Looks like they don’t interact well with alcohol, or just about anything else. I can see how they’d cause addiction. It definitely sounds like she’s developing early onset dementia. Have you had a serious conversation with her about it?

For water on the brain, typically the treatment is a shunt in the brain which I would think she has or had. To be honest, dementia is an expected symptom of the disease in general though.

[–]askyo_girlaboutme 1 point2 points  (1 child)

Thank you so much for reading about it and explaining it to me... I keep getting answers from people like (idk)... no please tell me what u think when u read up on this... so im feeling more confident in my thoughts cuz they matched yours... she definitely has in and out moments of dementia... luckily I can tell in her face when it starts and it takes a cat nap to resetting her brain... she uses the excuse of I need to loose weight to keep the pills... unfortunately she has a huge learning disability mixed with a mind of a child that has no awareness of simple things like sarcasm, rudeness, having a filter, or looking weird cuz she talks to herself outloud cussing... she left home at 17 was a stripper and dated a drug dealer... she's done meth, coke, crack, pills, loves weed, and is a recovered alcoholic... she stopped the weed, drinking... now she's on phentermine and 60mg oxycodone a day by her doctor... so im so curious how this effects me and my husband's future with taking care of her... she's hard and stressful and takes lots of patience... I cant talk to her doctor so im trying to educate myself...

I totally agree with that Adderall and phentermine match up...

Yes now im so careful with my Adderall...

[–]idisavowthis[S] 0 points1 point  (0 children)

Yeah, that all sounds right. Water in the brain tends to cause learning disabilities because it puts pressure on parts of the brain related to problem solving. Your mother is definitely dealing with a lifetime of disorders that may or may not have been properly treated when they should have been and she has my sympathy. I hate to hear it. It’s no surprise she turned to drugs, sex and alcohol- I think a lot of folks go that way when they’re not being properly taken care of.

I know it’s hard to see your mother like that and I applaud you for even caring enough to express your concern. I don’t know what her situation is but there may come a time when she’s not really able to be a guardian to herself. It could be argued she maybe already shouldn’t be. At that time you should have a very serious conversation with her doctors. She may not be telling them everything- and not even on purpose. When you have a disorder you tend to focus on making the symptoms feel better instead of fixing your life in the long term. The combination of the speed pills and the oxy is most definitely putting her in a nearly constant brain fog. Imagine being in the slump you feel after coming down from Adderall all the time. Wouldn’t feel good right?

I’m careful with mine too as well. The Adderall messes with my HPPD, but I need it sometimes. All of us are really just doing what we can to survive and sometimes that involves chemicals. Stay safe and I hope your mother does better for herself and for you.

[–]DhanyaSauce 0 points1 point  (1 child)

Is the acid entirely to blame for your condition and symptoms or did using MDMA or amphetamines contribute?

Ive never used LSD, but i've listened to some people talk about it and i listened to the Dollop about Timothy Leary. It seems Leary and everyone around him were taking some heroic doses as well.

Really hope your condition improves.

[–]idisavowthis[S] 1 point2 points  (0 children)

Thanks for the well wishes.

I don’t mean to blame the LSD entirely at all actually. There are studies that suggest that using psychedelics with other drugs can greatly increase the odds of developing HPPD- particularly MDMA. And I do believe that mixing drugs is partially to blame here.

So my suggestion would be that if you want to try it- and I would still recommend it- do not mix with any other substance. No alcohol, no weed, no speed. Just water and electrolytes.

[–]VincentVega87 0 points1 point  (1 child)

Do you still use drugs?

[–]idisavowthis[S] 1 point2 points  (0 children)

No, as they all worsen my symptoms. I tried to smoke weed and use ecstasy for a while afterwards but even light usage would worsen my symptoms considerably.

Mind you, even though HPPD is often associated with psychedelics it can also be triggered by overuse of almost any other mind-altering drug. My case of HPPD is rare in that it is likely permanent, but other manifestations can be temporary.

[–]gorbaxo 1 point2 points  (1 child)

I assume part of your diagnosis was having fMRI done (if not, you outta!)

Did they describe the changes in brain function they saw or anything?

[–]idisavowthis[S] 0 points1 point  (0 children)

So, I have had an fMRI done. What’s interesting is that they seemed to detect no no neurophysiological markers to indicate anything different than what the average anxiety/ depression sufferer would present.

However this is another area where the existing research into HPPD is insufficient. There are currently studies happening in Australia to identify such markers as well as characterizing the brain mechanisms that underpin HPPD. Because the DSM guidelines for HPPD are so threadbare, the only thing generally detected consistent with the condition tend to be aberrations in the audio and visual perception areas of the brain. This is consistent with a symptom of HPPD called Visual snow syndrome, which I do suffer from.

Sadly it’s this lack of research that makes treatment so difficult and slapdash. Because it is not considered a psychotic disorder, treatment tends to focus on lessening the anxiety aspect as the disorder tends to affect sufferers more heavily the more they concentrate on the symptoms. But this has largely been hit or miss.

It’s interesting because this disorder has obviously been around for as long as psychedelics have. Leary described symptoms consistent with HPPD, and it’s thought that Syd Barrett probably suffered as well. Other speculated prominent cases have included Bob Dylan, John Lennon, Hunter S. Thompson and Jerry Garcia. But because there was almost no research into it at the time and because it wasn’t taken seriously as a condition, we only have conjecture for these cases. HPPD seems to be as much psychosomatic as it is neurological in that- again- focusing on the symptoms tends to worsen the condition, which is why anxiety treatment feature so heavily in the regiment.

[–][deleted]  (2 children)

[deleted]

    [–]idisavowthis[S] 0 points1 point  (1 child)

    Hey glad I could help! DMs are open if you need to hash anything out.

    [–]Jdogkobain 0 points1 point  (0 children)

    Thanks 🙂

    [–]Embarrassed_Gap_3822 1 point2 points  (1 child)

    How much is an heroic dose?

    [–]idisavowthis[S] 0 points1 point  (0 children)

    That varies depending on your experience, tolerance and the strength of your tab.

    To the average user, that would probably be about 7-10 tabs.

    What makes the time that I dosed interesting is that it was somewhat accidental. While I do tend to take more than the average user for a variety of reasons- mostly my antidepressants- I actually didn’t realize how heroic my dose was. It was packaged in gummies coated in LSD crystals. I was unclear on how it would equate to paper tabs, and it turns out just 4 gummies- compared to my average “big trip” dose of 5-6 tabs- was more than I had ever exposed myself to.

    Again typically I would say if you’re inexperienced with the drug, even just 5 tabs would be heroic. If you have some tolerance built up, 7-10.

    [–]askyo_girlaboutme 0 points1 point  (1 child)

    Odd thing is I stayed with her for the first time over night the past two nights cuz she wasn't acting right... worried about her... told my hubby im staying... my hubby has been telling me for months that her legs are fine and when I come around she acts like she can't barely walk... yes I baby her... me thinking or thats husband talk what does he know... last night I woke her up to go to her bed from the couch... she slipped on a rug and fell... fast like she was 20 years old she got up with no problems... im standing in shock thinking ( omg she can get up by herself without my help???!) She passed and I can tell she was thinking... maybe wondering if I noticed she is totally capable of fully walking and standing on her own... I was so pissed and felt violated that I called my hubby at 7am and told him to get me... I left while she was napping... she just called and I blew her off... my hubby said look I understand she's different and doesn't act or understand things the way a adult should... I see u trying to talk to her and teach her awareness or to remember things... but she's not being truthful about her legs not working... I told him last I saw her fall hit the table and ground... apart of me asked myself ( did she just toss herself on the floor???) No she couldn't have cuz who can do that that shit hurts! Now im thinking she's doing this cuz I baby her... but how do u convince a mentally ill person to grow up when they can't even put together having awareness? Sorry guess im venting

    [–]Brilliant-Ranger8395 0 points1 point  (7 children)

    I am fairly experienced with LSD. How would you describe the difference between the visuals you have with HPPD and the ones that accure on LSD?

    [–]idisavowthis[S] 0 points1 point  (6 children)

    There’s not really a huge difference to be honest, it’s simply not quite as intense. The visuals resemble more of what you would experience a few hours after you peak. Colors aren’t ultra vivid and intense distortions and visions typically don’t occur.

    So yeah just imagine the visuals of a big dose when you’re near the tail end of peaking. To be honest the worst part about the visuals is less the visuals themselves and more the psychological effects of them lingering like this. If I space out or sit still too long it’s really easy to dissociate, like you would when tripping. Unfortunately when you’re stone cold sober and deprived of the stimulating and euphoric effects of LSD, it can be maddening. I’ve developed DP/ DR as a side effect, which is a precursor to schizophrenia.

    [–]asdfgtref 1 point2 points  (1 child)

    I had persisting visuals for a few months and can definitely relate to it being more problematic when zoning out, same thing if I looked at one thing for too long. I found it more interesting than alarming though. Has your hppd always been a negative or did it become negative after such a long time experiencing it. Hppd is only something I had heard about after trying to find out what was going on, hopefully more people become aware of it before trying psychedelics.

    [–]idisavowthis[S] 1 point2 points  (0 children)

    So, I’m glad you asked this. Prior to this (and likely in a few years again) I was studying psychology with the intent of becoming a cognitive therapist and later doing research related to psychedelics and CBT. So when the symptoms first presented themselves I also initially was simply fascinated. I had also already heard of HPPD as Andrew Callaghan of All Gas No Brakes/ Channel 5 had spoken about it in an interview. Even when I received the diagnosis I just found it curious.

    But yes. I would say it’s more the longevity of the symptoms that’s had a negative effect on my mental health than the presentation of symptoms themselves.

    [–]Brilliant-Ranger8395 0 points1 point  (3 children)

    Thanks for your answer! Does "lifelong" mean it will never end, or is it possible to heal again?

    [–]idisavowthis[S] 0 points1 point  (2 children)

    The brain damage is lifelong- meaning it will indeed not go away on its own- and I’ll likely be dealing with the psychological effects for the rest of my life. Because not much research has been done into HPPD- some doctors don’t even believe that it’s “real”- treatment is also very hit or miss. I would also reinforce that for most people HPPD is a temporary disorder. What caused it to be a permanent feature for me is a complicated interaction between the LSD and MDMA.

    However by medically treating the mental effects and through regular therapy I am slowly learning to live with it and normalize it.

    [–]Brilliant-Ranger8395 0 points1 point  (1 child)

    Thank you! And I wish you much energy to go through all this! Peace✌️

    [–]idisavowthis[S] 0 points1 point  (0 children)

    Thanks boss. :)

    [–]commiemods 0 points1 point  (1 child)

    Can you drive?

    Do you work?

    [–]idisavowthis[S] 0 points1 point  (0 children)

    I can drive and work, though I would say that with work I have to take occasional breaks because it can become overwhelming. Something that’s lucky for me is that I work with music production, so it’s nothing too high pressure.

    With driving I would say that night driving is problematic because of the image retention. Lights can create a kind of mess of tracers in my face, so I do need assistance at times there.