THIRD WAVE PODCAST
When the World Still Looks Different: Hallucinogen Persisting Perception Disorder
As a teenager experimenting with psychedelics, Ed Prideaux had no inkling that his trips would stay with him for the rest of his life. But days after his final LSD trip, when he was still experiencing melting walls and tunnel vision, he knew something wasn’t right. In this episode of the Third Wave podcast, Ed talks with Paul F. Austin about Hallucinogen Persisting Perception Disorder (HPPD), what life is like for those who have this condition, and what factors may contribute to the risk of developing it.
Ed Prideaux is a UK-based writer and journalist who has lived with the visual and audio distortions of Hallucinogen Persisting Perception Disorder since he was 17. As a supporter of the promise shown by psychedelics, he seeks to bridge HPPD patients with the psychedelic community through advocacy for the Perception Restoration Foundation, a nonprofit dedicated to understanding and curing this condition. Ed has written about psychedelics for the BBC, VICE, The Independent, and others.
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- What is HPPD, and what is it like to live with it?
- The difference between flashbacks and HPPD.
- What happened with Syd Barrett and LSD?
- Ed’s personal experience with HPPD, and the psychedelics that brought it on.
- The unpleasant aftereffects of Ed’s final LSD trip.
- How Ed realized he wasn’t returning to “normal”.
- The isolation of suffering persistent visual and audio distortions as a teenager, and not being able to tell anyone about it.
- The factors that can mitigate or contribute to developing HPPD.
- Paul’s own experience with post-trip visual distortions, and how they differ from HPPD.
- The current HPPD studies conducted by Macquarie University.
- Is there a way to tell if you’re at risk for HPPD?
0:00:00.0 Ed Prideaux: You know I was still in the position of saying, “LSD is spiritual.” So any sense that it had caused permanent alterations to my visual cortex probably wouldn’t have gone down well for the pro-drug propaganda I was selling them. And I just remember various experiences where I’d be there watching TV with them and then they’re in the lounge or… And to the left of me, the walls would be kind of melting, the carpet beneath me would be moving, it might have a faint skeletal geometric pattern on it. There’d be flashes of green and white and blue, and the TV would have a strong aura around it. I’d have tunnel vision. I’d look over at my dad, maybe he just asked me a question, I’d look away and there would be a kind of golden, bleached after-image of him in the mid… Suspended in the middle of the air.
0:00:55.7 Paul Austin: Welcome to the Third Wave Podcast. I’m your host, Paul Austin, here to bring you cutting-edge interviews with leading scientists, entrepreneurs, and medical professionals who are exploring how we can integrate psychedelics in an intentional and responsible way for both healing and transformation. It is my honor and privilege to bring you these episodes as you get deeper and deeper into why these medicines are so critical to the future of humanity. So let’s go, and let’s see what we can explore and learn together in this incredibly important time.
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0:04:37.6 PA: Hey, listeners, and welcome back to Third Wave’s podcast. Today, we’re exploring some of the sort of shadow or dark side of psychedelics. We have Ed Prideaux, who is a UK-based writer and journalist who has lived with the symptoms of HPPD since he was a teenager. Ed is an enthusiast of the psychedelic experience and its clinical promise, and he is seeking to bridge HPPD patient groups with the psychedelic community through advocacy for The Perception Restoration Foundation, a 501C3 charity that raises awareness and funds for studies into HPPD and visual snow syndrome. Prideaux has written about psychedelics for the BBC, VICE and The Independent, and published pieces on music history and psychology for publications like The Guardian, The Spectator, The Quietist, The Financial Times, and others. Ed, welcome to the podcast. It’s good to have you on.
0:05:34.8 EP: Thank you, Paul. Thanks for the introduction.
0:05:36.9 PA: So Ed, let’s start with a few of the nuts and bolts. I mentioned the acronym HPPD in the introduction. If you could just provide our listeners with a little context on what HPPD is? What does that stand for? What is it?
0:05:51.3 EP: Cool. So HPPD stands for Hallucinogen Persisting Perception Disorder. And it’s the name given to describe an experience some people have where after they take psychedelic drugs, but these kind of perceptual changes can also be caused by other kinds of drugs. So after they take psychedelics, some people report lasting changes to what they see, and the HPPD diagnosis is very broad, and it’s quite ill-understood, but some people report also changes to their cognition, to their mood, to their sense of being present in the world and their connection to their bodies. So it’s really quite broad, all-encompassing, but I suppose the meat and potatoes of HPPD is that shortly after taking psychedelics, some people report consistent types of visual changes, and I’ll just list off some of the core visual changes people report. So a classic is a visual snow, which is when your field of vision, either visible in every environment or especially in dark environments or on blank surfaces or in the sky, seems to be covered in hundreds of small grainy dots, almost like TV static. It’s literally like, and the name comes from it, ’cause it almost looks like snow suspended, small snow particles and the kind of breadth, and presentation, and detectability of this visual snow can really vary.
0:07:27.6 EP: So in my experience is that, it’s definitely detectable in everyday life, but only really if I pay attention whereas some people, it’s like full-on like you’re actually looking at a TV, it’s like a full-blown on dial TV, so it’s hugely apparent. So you have visual snow, you also have after-images, which is where you’ll look at an object, and when you look away, you might see basically like a representation of the objects in like a silhouette form, and in my own experience, for example, if I look at this tub of moisturizer on my desk, I’ll look away and although I’m not getting this effect right now, if I was perhaps a bit more tired, it would be almost like a golden, shining, neon bleached looking silhouette on the wall after I look away. After-images, there is halos where around objects there’ll be almost like an aura kind of effect, which in my experience is often bordered by a kind of rainbow trim or… These are the kind of core sets of changes people just consistently report, it’s like almost everyone reports them with HPPD, but then on the more extreme end, people will also see geometric patterns, full-blown mandalas and kaleidoscopes, some people will have intense strobing.
0:09:03.9 EP: I know of one guy who reports his vision flickering at a kind of constant rate of about eight strobes a second, I think that is what he said, some people report auditory kind of pseudo-hallucinations, and then there are certain physiological somatic reports as well. Tinnitus, strange kind of electrical sensations, kind of similar to what you people might have experienced in psychedelics, and also kind of a condition that seems to go alongside HPPD with some frequency. I saw one study of, I think they interviewed 25 HPPD patients, of whom 90% experienced this. Sorry, more than 90% experienced this, which is depersonalization-derealization, where depersonalization is a sense where you’re separate from your body, where it’s almost like you’re looking out at the world as if you are looking through a TV screen, like your living inside your head, so you are radically disembodied. And then derealization is when the world around you loses it’s intuitive sense of realness, and DPDR is something that thankfully is relatively sparse rather in my experience these days.
0:10:14.2 EP: When I first developed sort of HPPD style perceptual changes, it was certainly pretty occasional, it would just be a certain striking sense of, I don’t feel quite here right now, but when I’m in periods of great stress, it seems that both the visual changes and the sort of depersonalization-derealization really amplified to the point where, I’d say that depersonalization-derealization is where the real distress has been in my experience, but to kind of loop all these together, these perceptual changes, these cognitive changes, and these mood changes, they don’t necessarily mean that if you went and saw a psychiatrist, you’d be eligible for an HPPD diagnosis. In the DSM-5, there are three core criteria.
0:11:07.6 EP: One is having these experiences. Two, is that you can definitively link them to the drug experience. Whereas if you, for example, had a very recent head injury or you also had a prior diagnosis of schizophrenia, it’s probably unlikely you could pin it all down to a post-drug perceptual change experience. And then third, because this is hallucinogen system perception disorder, this is a mental illness. Technically, these changes have to produce distress, so in my own case, if I was speaking very technically, once I fulfill a large portion of the criteria for HPPD, the fact that it’s not consistently distressing and it’s actually fairly neutral in my life means that I actually wouldn’t be diagnosed, but in kind of common parlance, we seem to treat HPPD and just perceptual change in general as almost equivalent, and for the sake of ease, I suppose, HPPD is just a label we use.
0:12:05.2 PA: Right, because it just helps with defining some of these abnormal changes or experiences after either a psychedelic experience or experiences with other drugs, what I’ve heard about HPPD and done some research on is that it usually, it’s catalyzed if psychedelics are done in a stressful or maybe festival environment if psychedelics are done alongside other drugs, it could be cocaine, it could be methamphetamines, it could be ecstasy, it could be other things, that it’s a fairly rare occurrence, for example, in clinical trials, although I do wanna dig into that a little bit… And that it tends to be more commonplace when psychedelic use is, let’s say, irresponsible.
0:12:50.6 PA: Now, another phrase that is often used more so in the negative portrayal of psychedelics are flashbacks, and I just wanna kind of clarify that with you. The sort of common understanding of flashbacks is let’s say, you have a bad trip, you have an hallucination or an experience on that bad trip, then some people are worried that, “Hey, a year from now, two years from now, five years from now, you’ll re-experience that bad trip through some sort of flashback.” The propaganda of that has been, “Oh, there’s LSD in your spine, and there’s a spinal drip, and then LSD drips and then you kinda re-experience that.” That from what I understand is not true, but I just… Just if you could help us flesh out a little bit more, a flashback versus HPPD. Is there overlap there? Is this whole notion of a flashback just sort of absurd and ridiculous? Kind of help us to discern that.
0:13:34.1 EP: Right, yeah. So, something I should have mentioned in my first response is that they are actually technically two types of HPPD that are described in the literature, and what I was describing were these kind of, the visual snow, the after-images, the halos, the geometric patterns… I was describing these in the context where these are an invested feature of your everyday perception, like persisting perception, this is just what you see now. And this can last for weeks, months, years, in my case, six years, in some cases, decades. In some cases, whole lives. Type one HPPD is the classical flashback phenomenon, where rather than this being something that’s just always happening, and especially when you pay attention to it, type one HPPD is when it occurs in kind of discreet episodic re-experiences of the psychedelic state. I think that type one HPPD is… ’cause kind of as I was intimating in my first answer, HPPD is actually quite a bad name, I think, for these kind of changes because it’s tied necessarily to hallucinogens, but as I said, you can get these identical perceptual changes through non-hallucinogenic drugs and actually sometimes through just anxiety without ever having taken drugs.
0:14:53.0 EP: But type one HPPD is arguably… I’ve seen some suggestions that this is almost the truest HPPD because it is the most necessarily linked to hallucinogenic drug experience, because people in the most acute type one HPPD states, the most acute flashbacks, they are, in some cases, literally thrown back into the headspace, the same types of pseudo-hallucinations, visions that they had in a particular trip, the same somatic sensations. So, the whole idea of the flashback has sadly been captured by propaganda, and it can be misleading, especially when it’s tied to ideas like LSD is stored in your fat cells, your spine, and those ideas are still, unfortunately, quite common. I was speaking to a friend at a bar not too long ago, and he was telling me… He was still in the 2000s, we might have seen that this kind of propaganda was something of the 70s or the 80s, but no, he was being told, “LSD and… Being stored in your spine.” And yes, it’s 2005-‘6, which is quite worrying, and I wonder where LSD is mentioned in schools today, whether these kind of myths are propagated.
0:16:08.0 EP: But fat cells and spine, spinal columns aside, the flashback is not a myth. It’s 100% real for some people, and it’s been reported in the clinical literature since, I think the first documented use of the word flashback was 1969. That’s when these reports started flooding in, although interestingly, the first description of lingering perceptual change was in the 1950s. This was in the first wave of psychedelic research, although as you mentioned, it seems that the clinical trial process, then as now, is quite a good protector against, so helping these really more chronic distressing cases of perceptual change.
0:17:00.6 PA: So I’d like to get into your experience. We heard a little bit about how HPPD has affected you, what your experience with it has been, but just in terms of that origin story, I think a lot of our listeners will be curious to know. How did you develop this? What was that experience like, in terms of either the substances that you were using or the setting or the context and environment that you were in? And then just psychologically, how did it impact you initially? And how has your relationship to it developed as you’ve become more used to it and sort of maybe the impact of it has become less significant over time?
0:17:35.1 EP: Right yeah. So I think undoubtedly, although the whole issue is under research, so we don’t know exactly why and in what ways, but I think that kind of uncontrolled use outside the lab or therapy or outside of therapeutic settings undoubtedly made my development of these changes more lively. The first thing is that I was only 17 when I started experimenting with psychedelic drugs, teenager and my use kind of as a teenager, and as someone who’s somewhat impulsive anyway, was not particularly disciplined. So, either in terms of frequency or dose, I think that any high school trippers will resonate with that. So, I was… And also, I was not experimenting with tested LSD. I was using 1P-LSD, which, it’s speculated is metabolized into LSD, and phenomenologically and chemically is the same drug as LSD. But we don’t know.
0:18:41.5 EP: And it’s entirely possible that this kind of analog drugs make these kinda perceptual changes more likely. I’ve heard kind of illusions that, 1P-LSD is almost like a dirtier experience. It kinda just feels like… It doesn’t feel as clean as just straight LSD. But obviously, we don’t really know. But either way, I had four psychedelic experiences when I was at school. I was first drawn to psychedelics through music, through a passion for both Pink Floyd and the Beatles. And especially, I became absolutely fascinated with the story of Syd Barrett, and the almost mythological character of his story how LSD both gave him the kind of cognitive and aesthetic freedom with which to make such incredible music, but also completely destroyed him and the idea he was never the same. That gripped me when I was about 15, and in quite a deep way, I’ll move on to my drug-taking now.
0:19:48.0 PA: No, let’s go into that a little bit because that’s never been mentioned on the podcast. And I obviously, I think probably everyone who’s listening to this has heard of Pink Floyd, but they may not even know explicitly the story of Syd Barrett. What happened there? What was Syd Barrett’s relationship with LSD, and what ended up happening?
0:20:04.4 EP: Yeah. When I was at the peak of my Syd Barrett obsession, this would have been an amazing prospects to just digging into all my readings and podcasts. But yes, Syd Barrett. So he was the original leader of Pink Floyd. But before Pink Floyd became the band we all know and love, the Dark Side of the Moon and Medal and Animals, and Wish You Were Here, they were a very, very different band under the direction of Syd Barrett. Syd, he was younger than the others. And he moved down to London in 1965 to study at art college. And beginning in that year, he started experimenting with hallucinogens. I believe his first experiences were with Morning Glory seeds, LSA back in Cambridge. And he had some fairly good experiences. Although, there was one particular experience which I read about when his Cambridge friends noticed that his behavior was quite strange afterwards, and his pupils for weeks afterwards were different sizes, which quite concerned them.
0:21:09.5 EP: But anyway Syd… I believe in the summer of 1965, has his first experience on LSD. And it’s striking how high their doses were in this kind of Cambridge crowd. They used to take what they called a god dose of 1000 micrograms, which kinda blows my mind, given that 200 micrograms feels like a real head trip to me, so 1000 mics, I don’t believe that Syd did the equivalent of 10 hits in his first trip, but it had a very profound effects on him. And his subsequent trips, friends, even at the time, noticed that he was prone to a certain dissociation and kind of fluidity of imagination in the trip that struck them as abnormal. So he comes to London, he’s continuing to experiment, it seems at least relatively frequently with LSD. And that makes his way into his music. So 1966, he goes through an incredible period of creativity while he’s at art college, which eventually drops out off to pursue Pink Floyd full time, where he is just writing songs, incredible songs just kind of day in, day out. Basically, I’ve heard that most of the songs that made it’s way on Pink Floyd’s first album, and even into his solo work was done in this quite intensive three months period.
0:22:33.5 EP: And there were various illusions to psychedelic experience in his music. A psychedelic experience is the fundamental metaphor of a track like Interstellar Overdrive or Astronomy Domini. But anyway, Syd, it seems started taking LSD too frequently. And in the language of the modern psychedelic movement, we’d say he wasn’t Integrating his experiences. And it seemed that at least some of his experiences were genuinely traumatic. And that’s especially when he was thinking about his career when he was on drugs. ‘Cause Syd he was raised… He was almost like a classical poet’s artistic type, extremely sensitive, extremely sensitive to the idea of authenticity with his arts. This is someone who had been a devoted obsessive painter since he was a child. So he took his aesthetic life very seriously. But with Pink Floyd, with his movements in the music business, he was encountering more and more executives saying, “You gotta produce pop hits, you gotta produce the next big single.” And it really started to wear on his mental health, fretting away about whether he had sold out and then throw in just the sheer exhaustion of their touring schedule.
0:23:48.3 EP: Looking at the dates, they never had any time off, and it seems if just possibly Syd, when he did trip, it just had to be on the days in between all his hectic touring. And I’ve seen reports where he was taking LSD on tour as well. But beginning around May, June, July 1967, he has a real change in his personality. He didn’t turn up to this BBC recording session in the accounts of his bandmates and they went looking for him and they found him on the streets with, I believe, a girlfriend where he was barefoot, his feet were cut up, and it seems that he was basically freaking the fuck out on acid, and Rick Wright, the keyboard player for the Pink Floyd said he was never the same. And his behavior became increasingly bizarre, he became violent, he became dissociative, he become isolated, depressed, withdrawn, continued experimenting with psychedelics, it seemed more sparingly but still, in the following two years. And there’s one more obscure story which people don’t know much about, but it’s a very striking one, which is, he goes to Wales in 1969, which is about a year after he was kicked out of Pink Floyd because he was so all over the place, where they take LSD in this kind of countryside cottage.
0:25:12.4 EP: And his friend has a vision of Syd on the trip. Almost like a… It was like a childhood teddy bear, cause Syd was very into his allusions to childhood and playful child-like poetry. And she has this vision of him as this teddy bear, and then the teddy bear… It’s almost like in her senses that from that LSD trip, he was never gonna be able to come back. It’s like he stayed as that teddy bear forever. That was her description, and obviously, she was on LSD, so you kinda [chuckle] take it with a grain of salt, but I think that’s quite a powerful metaphor, but anyway, that’s the detour over.
0:25:57.4 PA: But obviously, reading through that, right? If you’re 17, you are impressionable, you’re starting to open up into psychedelics, your sort of hero of your perception is you saw how off the deep end he went in a way, right? And Syd Barret was one of the greatest musicians ever. There’s no doubt about that. And yet, there’s this sort of classic parallel example of those who have… And I think I had read he was predisposed to schizophrenia or a psychotic break, it had been in his family, the psychedelics, obviously all the acid amplified that, all the stress of the things that you mentioned amplified that as well. And like in indigenous societies, indigenous communities, the shaman is often this person who has that psychotic break.
0:26:44.1 PA: So part of this as well, and I’d be curious to hear your thoughts and how this ties into maybe HPPD or anything else, right? We also just don’t have, especially in the ’60s, we did not have the cultural context, or how do you actually help someone who goes off the deep end integrate that new sense of self, and instead of supporting him in that. I think he was just locked up in a home and taken care of by a caretaker, he may even still be alive from…
0:27:11.8 EP: No. Syd died in 2006.
0:27:14.1 PA: He died in 2006, Okay.
0:27:18.3 EP: Yeah. He was never actually… From descriptions, it really does sound like a case of schizophrenia especially with the withdrawal, and beneath it, he was still experiencing hallucinations, but he was actually never diagnosed with any form of mental disorder or mental illness, at least according to his sister Rosemary. It just seems that he had… I don’t wanna talk about Syd too much ’cause it is a podcast about HPPD. But, I suppose I’ll return to my story a bit more, so… Yeah, became obsessed with the role of LSD in shaping the music and culture of the 1960s. And I’m an insatiably curious person anyway, and then I started reading about the sort of studies which were emerging around 20… Which weren’t as heavily reported as they are now of course. But they were still out there.
0:28:08.1 EP: Things like the John Hopkins psilocybin study, which indicates that a single experience could be among the top five most meaningful experiences in people’s lives. I remember coming across the study by David Nutt, which suggested that a LSD ‘magic’ mushrooms were at least on the measures he used very low harmful… Drugs were very low in harm and alcohol might even be worse than heroin. And of course it’s… You have to take that data in its own context and with a grain of salt, but I think that the danger is that to the undiscriminating mind of a 17-year-old boy, that graph means that LSD and ‘magic’ mushrooms are basically harmless. And I generally believe that taking a tab of 1P-LSD would be way less bad for me than just having some drinks with my friends.
0:29:03.1 EP: So I order 1P-LSD through the open web, ’cause it was legal back then, kind of in a grey market way. First trip was a mixture of horrifying terror, some less at the peak and then almost depression and boredom on the come down [chuckle], but it was intriguing enough…
0:29:30.9 PA: And this was your first ever experience with psychedelics?
0:29:34.0 EP: Yeah, I actually, my psychoactive history was, got drunk maybe three, four or five times, and then just went straight to one tab of 1P-LSD. Yeah, I’m honestly looking back, so… What’s the word? I’m just so fucking lucky ’cause that first trip, the story is basically that I was having… I was behaving very bizarrely on the come up. I was alternating rapidly between hysterical laughter and crying, my thoughts were getting bizzare, I was thrashing on my out-of-tune shitty electric guitar at really high volume. And my friends who didn’t know anything about psychedelics, who had volunteered to trip set me were getting both really irritated and also quite concerned about me. And we went out for a walk, and this is when I was coming up even more.
0:30:33.1 EP: And for some reason, [chuckle] I brought my guitar with me. And so [chuckle] I said, “Guys, I’ve gotta run back and drop it off, I cannot be carrying my guitar around with me on this long walk,” and I was like, “You guys are gonna be here when I get back, right?” And they said, “Yeah, yeah, of course.” So I run back to the house, I managed to find it, I dropped it off, and I run back to the place where they promised they’d be, and they weren’t there. And this is maybe, late October time, when autumn, winter, UK. So it’s basically pitch black, apart from the street lights, and I start to run. I start running, I start running faster and faster, I start panicking, I start having intense visuals of planets and stars in my peripheral vision, having a full-blown panic attack really.
0:31:19.1 EP: And then I start screaming my friends names, essentially screaming for my life. Ran all the way to a local park where I have a vision of a dog trailing me, and some… It was just like a shadow person, it was just horrific. I was kind of on the edge of psychosis looking back. Managed to find my house, ran back, and they’re there, my friends, my shitty friends. Anyway, so a pretty rough first trip, at least at that point. Second trip was pretty about a month later, I took one and half tabs and it was a pretty smooth sailing, to be honest.
0:32:01.6 EP: This was the experience that convinced me that there was something to this thing, to LSD, to psychedelics. ‘Cause it was… At least seemed to be almost kind of spiritual. Although the thing with psychedelics is that when you actually get into what happened in the spiritual phase of a trip, it just sounds like you’re a bit of a douche. My spiritual part of that trip was wandering around my local park at 7:00 AM in my dressing gown and slippers, listening to the Moody Blues like, “Oh, my God, this is heaven. I’m in heaven.” [chuckle] Or you’re listening to The Beatles and staring at the fence and saying, “George, I’m listening to you.” [chuckle]
0:32:41.6 EP: Third trip, blissful. Then pretty horrible on the comedown. I started getting stomach pain from this 1P-LSD. The fourth trip, did it with a couple of buddies, mixed bag. Some funny bits, some pretty high anxiety stuff though. And then I didn’t sleep after my fourth acid trip, and my parents were due back the following day. I was kind of worried ’cause I was still feeling the sort of… Still feeling the LSD a bit, although mixed in with just sheer exhaustion. Especially when I took two sleeping pills to try and fall asleep quickly, but they didn’t actually push me over the edge into sleep, they just made me really, really tired.
0:33:30.0 EP: It was almost like post lysergic, dysphoric afterglow, post lysergic blues, I call it, mixed with sleep… With just sheer fatigue. And my parents wonder if something’s up with me because I was not obviously behaving normally. And after some fairly uncomfortable interactions during which I am literally falling asleep mid-conversation, they just said straight, “Are you on drugs?” And I said, “No.” Although, I was… I later just confessed. I said, “Last night was the fourth time I dropped acid,” and I remember my sister saying, “Are you sure you don’t mean cannabis? ‘Cause we’ve all done it, it’s fine.” And I was like, “No, I mean LSD.” And their reaction was understandably, very angry. And my shtick about, “Guys, LSD’s way less dangerous for you than alcohol. Alcohol’s worse for you than heroin and you drink it every night,” didn’t go down very well. And I remember my dad saying, “Turn on, tune in, drop out. For fuck sake Ed, you’re a fucking idiot.” Basically, something along those lines.
0:34:49.9 EP: Quite an anxious re-entry into sober life. And then a couple of days after that, I was back at high school Monday morning waiting for class to call. And that’s when I started really paying attention and noticing that things hadn’t quite returned to normal yet. And that’s when the HPPD journey began in the wake of that pretty uncomfortable trip, which it wasn’t integrating any of these trips anyway, but it was a fairly anxious one, that whole episode. Yeah.
0:35:25.9 PA: Let’s continue the story because I think the listeners will be interested. Then as you’re sort of trying to land back to a somewhat normal reality, you start to notice that your perception of reality has shifted or is shifting or hasn’t returned to normal. What’s coming up for you? And how do you navigate that immediately? Let’s say when you’re 17, and how did you sort of navigate it over the coming months and years?
0:35:51.7 EP: Yeah. First thing I have I ever remember noticing was almost a kinda star-like flickering on the carpet. “I’m sorry, well that’s weird, what’s going on there?” And I kinda just dismissed it, like, “Oh, that’s just one of those things.” And then I just started noticing it the next day, “What is that?” And then I started noticing things in my classroom when we’re doing like “Do you have registration in the states?” The class register, yeah. And then just sat in the classroom and then just noticing kinda the walls were kind of moving. Noticing that when I looked over at people on my table, they had this kind of white brilliant aura around them. Or if I looked at them and they looked away, I’d see quite an accurate after-image of them on another wall. And I was like, “What the fuck is going on?” I remember being in biology class and noticing… And kind of turning to my friend and going, “Hey, you know how I have been tripping on acid?” [chuckle] He was like, “Yeah.” I said, “Well, that wall is actually like melting.”
0:37:14.5 EP: And he’s like, “What do you mean to say?” We had… You know the wall with the blinds on it? It’s like dripping, it’s actually moving.” And he just found it funny and didn’t really know how to respond. And then these changes, they just… It was a source of both just distress and distraction really. ‘Cause, you’d be in assembly… I went to a Catholic school, so we had chapel every two weeks. And I remember just kind of sat in this big chapel and just kinda basically… Almost as tripping out. The walls and the backs of people’s blazers just dissociating which wasn’t necessarily unpleasant. But then I started getting other effects. I’d be wandering around, and then I’d just suddenly be struck by tinnitus and this mental fog. But the worst part for me, throughout the six years I’ve had HPPD is the isolation. ‘Cause, of course, I couldn’t tell my teachers or my parents about what I was going through, because A, I couldn’t tell my teachers ’cause I’d be expelled for taking Class A drugs. B, with my parents because I was in the position way of kind of still defending my drug use.
0:38:30.6 EP: I was still in a position of saying, “LSD is spiritual.” Any sense that it caused permanent alterations, my visual cortex probably wouldn’t have gone down well for the pro-drug propaganda I was selling them. And I just remember various experiences where I’d be there watching TV with them and then in the lounge. And to the left of me, the walls would be kind of melting, the carpet beneath me would be moving, it might have a faint skeletal kind of geometric pattern on it, there’d be flashes of green and white and blue and the TV would have a strong aura around it, I’d have tunnel vision.
0:39:15.1 EP: I’d look over at my dad, who maybe he just asked me a question, I’d look away and there would be a kind of golden bleached after-image of him and then it suspended in the middle of the air when I looked away. It was… It really is quite a hallucinatory experience, HPPD, ’cause I don’t have it as strikingly as I did then, but back then, it was quite something for the 17-year-old mind to take. And I’m just… For whatever reason, I didn’t have the chronic clinical anxiety that some people get. It’s ’cause… Estimates are obviously very rough, but Henry Abraham, who was the first person to document these kind of perceptual changes after psychedelics in a serious way, and he’s behind the HPPD diagnosis.
0:40:04.2 EP: He found that… I think it was 50% of people who report these changes live with essentially generalized anxiety and panic attacks. 50% depression, one-third alcoholism, because alcohol is both an anxiolytic anyway, which reduces your anxiety, but also it seems both to reduce the intensity of the visual change and the anxiety, and the anxiety might be feeding the visual changes as well. So it is like a complex loop to people. So, people who have very severe HPPD, if my case sounds severe then, you don’t know how bad it can get really. [chuckle] It’s quite a rabbit hole when you read it… Just some of these case reports, I felt so bad for people, they’re almost… They are disabled when these changes are so bad. They can barely navigate living in the world, they can’t drive, they can barely hold down jobs. Because you can spin HPPD perceptual changes however you like… For me, it’s not particularly distressing anymore, it’s been too long. I don’t have the strobing or the intense trails some people have, so I can see. I can drive, it’s not a big deal.
0:41:16.7 EP: You just have to really keep on top of it, accept, sleep well, don’t take… And the changes won’t get too in the way, but some people, I don’t know how you spin it in a way that isn’t distressing because it’s simply too there, it’s too apparent. And especially if you had bad trips, these perceptual changes can be just a constant reminder of what you went through, and I think it can be a real living hell.
0:41:47.2 PA: It can be, absolutely, and so I’m glad we’re having this conversation and bringing this awareness, and I think just to reiterate, this isn’t necessarily common. It’s not like there’s a high percentage of people who are taking psychedelics and experiencing HPPD, but it does happen. And there are certainly things that, for our listeners at home, you know the way that we handle certain setting, even through your story and how accepted that experience is within your family or community or whoever else you are also makes a difference and an impact. The amount that you’re taking makes a difference and an impact, and whether it’s with other drugs as well. So there’s a lot of… It’s a multi-variable element and it’s a risk for people to be aware of in many cases. I know for me personally, when I started doing acid at the age of 19, and probably 19 and 20 did acid 15-20 times. Anywhere from 100-300 micrograms, so not ridiculously high, but still at higher doses.
0:42:44.4 PA: And I remember soon after graduating from undergrad, at the age of 21, I moved to Turkey. And I remember I was walking… I don’t know if you’ve ever spent time in Turkey, but the Mediterranean area, Fethiye in particular, Fethiye and Kos and Thalia. I was down there and going hiking in some of the mountains, and I just noticed, it was like a… It was a morning, it was a clear blue sky day and I was looking out into the mountains, and I just noticed that they were kind of like dancing and shifting a little bit…
0:43:14.2 EP: Oh wow, yeah.
0:43:14.7 PA: And I was like, Oh, this is probably because I’ve been doing a lot of acid. And so that sort of visual rep… Because I would often, whenever I would do acid, it was in the woods, in the mountains, at the beach, outdoors. And so there’s almost like a re-training of my visual cortex where now that I’m outside, I’m not on any acid whatsoever, but I’m seeing similar landscapes. The perception that I’m experiencing is, it’s dancing a little bit. And it wasn’t so much as to alarm me, where I had any sort of anxiety or distress around it, but it was just an observation where I was like, that wasn’t the case before I was doing acid and now I’m seeing some visual changes, even when I’m not under the influence. I did not conceive of that as being HPPD because there was no distress and I wasn’t worried at all, but I think it’s just an interesting personal anecdote about how these substances can actually influence our visual cortex even when we’re not on them whatsoever.
0:44:07.9 EP: Right, yeah. The… So, what I’ve been kind of struck by is how common these kinds of perceptual change experiences are, like sub-HPPD perceptual changes. I’d say that most people I’ve spoken to have had experiences like the one you described. And as you say, it’s not necessarily distressing. And I think that it’s interesting then that it’s not really too discussed. And I guess my theory is that this is the lingering shadow of the flash-back idea, is that you don’t wanna… ‘Cause if people were totally open that, “Yeah, I’ve had experiences where I’ve taken psychedelics… The mountains moved a bit,” that’s prone to being labeled as, “Oh, you’re having flashbacks then.” And it’s almost like our culture, it’s not yet open-minded enough or not yet willing enough to view these kind of things as potentially normal. It’s like our instincts, our bias is towards pathologizing them, “Oh, that’s brain damage. Oh yeah, you damage your visual cortex.”
0:45:10.1 EP: Whereas in the context of kind of psychedelic integration, I think that these kinds of… These kind of experiences, sub-HPPD perceptual changes, they can be developmental. I think that they can be really tangible reminders of your own psychedelic experience. In my own HPPD experience, or kind of under the label of HPPD, when I was doing psychedelics more heavily subsequently at the university, I found that my kind of symptoms of HPPD, so to speak, were very sensitive to music and the music that I had heard under the influence of LSD. And it wasn’t necessarily bad, like this was actually occasionally pretty euphoric, so at the same… Even among people who have persistent perceptual changes, I think a distinction needs to be drawn between when it’s… Really a distinction needs to be drawn between when it’s maladaptive, when it’s distressing, and when it’s actually potentially neutral or useful, I don’t know.
0:46:14.4 PA: And I think on that note too, I’d, ’cause I’ve also… I, at the age of 10, I was… I started wearing glasses. I was nearsighted.
0:46:22.3 EP: Yeah.
0:46:22.7 PA: And then my vision wasn’t terrible, but it wasn’t great, so I would go… Sometimes I wear glasses sometimes I wear contacts, sometimes I wouldn’t, it was sort of in and out, but I do remember sitting in high school and it would be hard for me to read the board sometimes, and I was just sitting in the classroom. Fast-forward to, at the age of 24, I started to microdose LSD fairly consistently and microdose psilocybin. And what I’ve noticed over the last five years is that my vision has improved dramatically.
0:46:50.3 EP: Wow.
0:46:50.8 PA: Now, I think that isn’t necessarily fully because of microdosing, it might also be because I stopped playing video games. I spent more time outside. I just didn’t wear any contacts and glasses whatsoever anymore, but I did notice that the main variable that was introduced was microdosing psychedelics and that it seems to have had a beneficial effect on my overall vision, so I think that’s also a potential upside, and now… Again, when I was experiencing that thing in Turkey, I just mentioned I was 21, 22, I’m now 31, and I can do a bunch of acid and go in the mountains, and I don’t have necessarily those visual changes at this point in time. So they were present for some time, but they’re not present anymore, so it just, again, goes to say that there’s upsides, there’s downsides, and because of how stigmatize psychedelics have been and how illegal, it’s just… We need a lot more research to fully understand the nature of these experiences and when they can be helpful, and when they can be harmful.
0:47:52.8 EP: Right, yeah, yeah. The idea that microdosing psychedelics can improve your vision, it’s not something I’ve heard but it certainly is plausible, ’cause that’s the core premise in Terence McKenna, Stoned Ape Hypothesis, isn’t it? That psilocybin can raise your visual acuity, and I think that really, that the more I delved into HPPD and trying to work out myself, what the hell is going on, it seems that there is different… The different nodes of our nervous system, the different ways in which humans interface with the world are really more interconnected than we think… To take the example of HPPD, I think that it’s suggestive that anxiety has a deeply interconnected relationship with vision, which seems like, whoa, what’s going on? And I think that this beyond the fact that HPPD perceptual changes can be distressing and it’s worthy of clinical response, I think the in and of itself, it’s just fascinating, and if we worked out what’s going on with HPPD and why… Why, for example, particular, why traumatic psychedelic experience might be so prone in causing these changes, it helps us understand in a deep way, like how brain arousal, trauma, anxiety, emotion, cognition, all intersect with vision, ’cause it’s fascinating to me, the idea of…
0:49:14.1 EP: Well, I don’t want to emphasize this too much because… ’cause if I want to kind of transmit any message today, it’s that HPPD is real and can create distress, but some people report that subsequent psychedelic experience, especially psychedelic experiences that are very liberating and which we seem to process a lot, can make these changes go away, then that doesn’t seem to sit too comfortably with an idea that this is a psychedelic… This is a strong chemical that somehow damaged your visual cortex, it seems that… It’s not often that applies, and there’s also the cure and in the same dose, but I heard a story through a connection once, where someone in the psychedelic community had developed severe HPPD after an Ayahuasca trip, then has an Ayahuasca experience sometime after that, which was very liberating and worked great till the next day and it’s all gone.
0:50:12.0 EP: So these kind of border cases, I think are really striking. And you mentioned that now you’re 31, you can take a bunch of LSD and not experience these changes, I think that definitely… I’d estimate that probably a majority of the people on these online forums panicking about their HPPD is teenagers, and especially teenage boys, just like I was, teenagers, love them or hate them, they have a certain attraction to risk-taking behavior, at the very same time is their brain is developing and very plastic. So it makes complete sense that a very strong experience, a very powerful chemical like LSD on a 17-year-old would make them more likely to have HPPD.
0:51:01.3 PA: Precisely. Well, this has been fun. We’re reaching the end of our time, and we… This is an in-depth dive into everything HPPD, and I just wanna give you an opportunity for the listeners, if they wanna find out more information about your work about HPPD, Where do we point them to?
0:51:21.7 EP: Sure, so I’m on the podcast, both independently and in connection with a non-profit called The Perception Restoration Foundation, and they’ve raised funds for kind of two pipelines of studies so far, well, one is through Macquarie University and this will nail stage, the first of a near imaging on HPPD patients, brains versus controls, to work out if there is a distinct neurophysiology, that HPPD may be caused by. And the other part of the Macquarie study is an in-depth questionnaire, ’cause part of the problem with HPPD is that we haven’t just got large data sets to try and track patterns of what’s going on, and so any HPPD patients, people who report HPPD, saw perceptual changes, listening, they’re encouraged to look out Macquarie HPPD questionnaire and fill out their experience. The other pipe… The other study pipeline is through Melbourne, where they’re developing a… Something called a psycho-physics tool, which when developed, it might be able to help people understand if they have HPPD or have a vulnerability to it, if they already have high levels and normal of visual oddities before they take drugs.
0:52:37.7 EP: And that… And the other, the Melbourne pipeline is genetic testing, which we do wanna believe, in the next couple of years to work out if there is something heritable that might make someone vulnerable to something like HPPD, and which they should probably want to know if they are considering dosing. But it’s a kind of… And the most immediate projects that I’m involved with, the PRF as well as to kind of pairing in podcasts like this is putting together an in-depth but concise information booklet, which I hope to release perhaps in early December, of basically just everything and anything HPPD, the possible neurophysiology, it’s link to traumatic psychedelic experience, the role of non-drug and also non-psychedelic drug factors in creating these changes possible questions researchers might wanna explore because something striking, is just how little even the most specialists and most well-informed scientists in the space necessarily know about HPPD. So I hope this will be useful to them and maybe motivate them to research themselves.
0:53:43.8 PA: Perfect, so just as a one last thing… What’s the name of the 501C3?
0:53:46.6 EP: The Perception Restoration Foundation.
0:53:48.4 PA: The Perception Restoration Foundation.
0:53:50.2 EP: That’s right.
0:53:50.6 PA: Perfect. So The Perception Restoration Foundation, be on the look out for Ed’s book that’s coming out soon about HPPD, and Ed, just thank you for sharing your story and for your willingness to inform our audience about this. It’s an important topic.
0:54:27.0 EP: Cool. Thank you.
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