Episode 4: The Longest Trip

[00:00:00] Heather: I remember in late May of 2022, I was out for coffee with a friend and she was wearing a striped t shirt. It was black and white and it was making me nauseous. The stripes weren’t stable. It was like they were moving and I couldn’t understand why. When I looked at the sky, it was shimmering in a way that it had never done before.

[00:00:38] Heather: I used to love to read. I used to love to get lost in a book. With my unstable vision, words were not stable on the page. It was like someone was always moving a piece of paper slightly. up and down to the left and the right. It was like, I could read if I really, really tried [00:01:00] hard. At least I could read out loud, but it took so much effort and I wasn’t actually absorbing anything I was reading.

[00:01:08] Heather: I felt completely and utterly disabled and I didn’t know why. And it was only when I went to an optometrist and she was doing the eye exam that she said to me, okay, close your eyes. What do you see? And I still saw the shimmering and the snow and she said, okay, this isn’t an eye issue. This is a brain issue.

[00:01:31] Arielle Duhaime-Ross: Do you know what’s causing these symptoms? Do you have a diagnosis? 

[00:01:35] Heather: At this point, I do. I know I have hallucinogen persisting perception disorder. I know that this is a result of taking psychedelics.

[00:01:50] Heather: I have come to terms with that. 

[00:01:55] Arielle Duhaime-Ross: About two years ago, Heather was diagnosed with hallucinogen persisting perception disorder, or HPPD. It’s a condition where the visual effects of a hallucinogenic drug, like psilocybin or LSD, continue long after a person has taken the drug. The disorder affects a small number of people, but it can have lasting impacts on their lives.

[00:02:19] Arielle Duhaime-Ross: And yet, few people have ever heard of it. Most, if not all drugs, come with some unwanted side effects. And psychedelics are no exception. Some people get headaches or nausea. Most side effects don’t last beyond a few hours, maybe days. But for others, the side effects of a trip can last for much longer.

[00:02:41] Arielle Duhaime-Ross: Sometimes years. And no one really knows why. HPPD is the kind of condition that brings up big questions. With psychedelic drug use on the rise, and companies working to make these substances into approved medications, how should we think about the potential risks of taking [00:03:00] psychedelics? Today on the show, The Longest Trip.

[00:03:03] Arielle Duhaime-Ross: I’m Arielle Duhaime-Ross, and this is Altered States. 

[00:03:14] Heather: So, my name is Heather. I’m a 41 year old female. I live in Toronto, Canada with my husband. I would describe myself as someone who,

[00:03:31] Heather: I’m going to have to redo this. This is such a hard question. I don’t know why. 

[00:03:36] Arielle Duhaime-Ross: Well, you’re feeling kind of raw today, right? 

[00:03:39] Heather: Yeah, I feel very raw today, and it’s, it’s In this moment, it’s so hard for me to even share who I am outside of mental illness because it’s been such a large part of my life for so long.

[00:03:56] Arielle Duhaime-Ross: Well before any of her visual symptoms appeared, Heather had been struggling with what’s called treatment resistant depression. 

[00:04:04] Heather: I’ve had depression for most of my life. I was on antidepressants. It’s from the age of 14. 

[00:04:12] Arielle Duhaime-Ross: To protect her privacy, Heather asked us to only use her first name. Heather says she tried group therapy, oral and IV ketamine, and about 10 different medications for her depression, including Prozac, Welbutrin, Lithium, and Effexor.

[00:04:27] Arielle Duhaime-Ross: Some medications didn’t work at all, and some helped her remain functional, but the depression never truly lifted. Still, she kept hoping that eventually she’d find something that would help her. And her hope grew when she heard about these new study results involving psilocybin. 

[00:04:44] Heather: I had read about psilocybin in the news.

[00:04:49] Arielle Duhaime-Ross: It looked promising. In clinical trials, researchers had reported that a single dose, combined with psychotherapy, could produce a quick and sustained antidepressant effect. 

[00:05:00] Heather: And so I put a Alert, a Google alert on. 

[00:05:04] Arielle Duhaime-Ross: One day, an article landed in her inbox announcing that Braxia Scientific, a medical research company, was starting a new trial.

[00:05:13] Arielle Duhaime-Ross: The company would be testing the efficacy of psilocybin therapy to treat treatment resistant depression. And the company said it would be the first Health Canada approved psilocybin trial involving multiple doses of the drug.

[00:05:26] Heather: I emailed them to say I want in. 

[00:05:29] Arielle Duhaime-Ross: In the fall of 2021, Heather was selected to participate in the trial.

[00:05:34] Arielle Duhaime-Ross: And according to Heather, 

[00:05:36] Heather: I was participant number four.

[00:05:41] Arielle Duhaime-Ross: To join the trial, Heather had to do a few things. First, she read the consent form. The form mentioned some rare side effects, including the transient recurrence of disturbances in perception. But it also said that these disturbances had, quote, not been reported in scientific studies [00:06:00] done under supportive clinical conditions.

[00:06:03] Arielle Duhaime-Ross: Eager to be involved in the trial, Heather signed. Next, she had to go off her antidepressants. 

[00:06:10] Heather: So, I was on SSRIs, SNRIs. all of those types of medication for 25 years. I’d only come off them three times with the last time being to participate in this clinical trial. When participants join a psychedelic trial, it’s not unusual for researchers to ask them to wean themselves off certain psychiatric medications.

[00:06:35] Heather: So scientists can better understand the effect of a drug in isolation. But coming off antidepressants is notoriously hard to do. 

[00:06:44] Heather: They. weaned me off my antidepressants in less than two months. 

[00:06:49] Arielle Duhaime-Ross: Heather experienced shaking, nausea, fatigue, and mood swings, but it seemed worth it. 

[00:06:55] Heather: I was convinced that this would be, this would be the thing that would [00:07:00] change my life.

[00:07:03] Arielle Duhaime-Ross: Between December 2021 and May 2022, Heather says the researchers gave her three doses of a synthetic version of psilocybin, meaning a version that was made in a lab. She took the first dose. 

[00:07:17] Heather: So, the first dose that I had was actually very cathartic and healing and I remember feeling unconditional love for the first time and experiencing what I call the divine mother and for the first five days afterwards.

[00:07:35] Heather: I felt really good 

[00:07:37] Arielle Duhaime-Ross: The second dose, three months later, was more complicated. 

[00:07:41] Heather: I felt a lot of the depression lift afterwards. Although I did see an increase in anxiety and some derealization after the second dose. Feeling like I was in a dreamlike state. 

[00:07:56] Arielle Duhaime-Ross: The anxiety never fully left her. After that [00:08:00] second dose, Heather got COVID.

[00:08:02] Arielle Duhaime-Ross: She was still recovering when she went in again two months later to meet the trial team, this time to prep for the third dose. It didn’t go well. 

[00:08:10] Heather: I’m recording this video now because I won’t have time later to write down these thoughts. Today was a really, really rough day. 

[00:08:18] Arielle Duhaime-Ross: She captured the aftermath of a therapy sessionin a video she kept on her phone 

[00:08:24] Heather: Um, I had my pre dosing integration session with, um, the new treatment team.

[00:08:31] Heather: And it was a mess going into it, just like so dysregulated, crying, feeling, um, Really scared and vulnerable and I felt like I didn’t get a lot of empathy from this team. They didn’t seem as warm and as kind and, you know, I was a mess in the car on the way home. I was asking them to help me regulate my emotions beforehand and they seemed pretty reluctant.

[00:09:02] Heather: At one point they even said, we’ve given you the tools and I felt very much on my own. 

[00:09:08] Arielle Duhaime-Ross: We reached out to Braxia Scientific for comment, as well as Dr. Joshua Rosenblatt, who was Braxia’s chief medical officer at the time of the trial, and the person in charge of overseeing the trial. Neither Braxia nor Dr. Rosenblatt responded to our emails, tweets, or phone calls. Heather went ahead and took the third dose, the final dose of the trial. 

[00:09:29] Heather: The third trip was challenging, but it wasn’t bad. I walked away feeling like the experience was insightful. 

[00:09:37] Arielle Duhaime-Ross: It was in the days that followed this third dose that Heather started experiencing something completely new.

[00:09:44] Heather: I really started to notice some distressing changes that I couldn’t really understand. 

[00:09:52] Arielle Duhaime-Ross: Heather had been feeling dissociated. 

[00:09:54] Heather: In addition to heightened anxiety and derealization, I noticed changes to my vision. 

[00:10:03] Arielle Duhaime-Ross: Heather told me she mentioned her symptoms to the trial coordinator during regular check ins, but a few weeks after the last dose, her part of the trial was over.

[00:10:13] Arielle Duhaime-Ross: And from then on, Heather says she was on her own. 

[00:10:17] Heather: For the first several months, it felt like I was in a nightmare.

[00:10:27] Heather: My life pretty much fell apart. I, I couldn’t work. I almost lost my marriage. I lost friendships. I couldn’t function.. I always see static. It never goes away. When I look at a blank wall, there’s a layer of static. I see halos around bright lights at night. When I look at the sky, it’s constantly shimmering. The night sky is never black or gray or a unified color.

[00:11:02] Heather: And because it’s so staticky, it’s hard to even be able to distinguish stars sometimes.

[00:11:12] Heather: For me, one of the most devastating parts of this entire experience is that my brain suddenly functioned differently. 

[00:11:21] Arielle Duhaime-Ross: Heather started to have issues remembering things. 

[00:11:25] Heather: I’ve lost my confidence and I’ve lost trust in institutions in a way, like trusting the medical establishment, trusting research enterprises that I would be taking care of.

[00:11:41] Arielle Duhaime-Ross: Wanting to just make it all stop, Heather made two decisions she now regrets. 

[00:11:47] Heather: At that point, I was destabilizing and my vision had changed, but I was just like, every time I do psychedelics, I have incredible insights and I just need to keep going. 

[00:12:03] Arielle Duhaime-Ross: She thought maybe a fourth trip would fix things. So Heather found an underground psychedelic therapist who gave her mushroom tea.

[00:12:11] Heather: There wasn’t one single person who said, maybe you should stop, Heather. Like, maybe this actually isn’t helpful for you. Especially since your vision is changing. Like, that’s, that’s a big thing. 

[00:12:23] Arielle Duhaime-Ross: Heather only felt worse after the mushroom tea, so she tried her ketamine pills, again. 

[00:12:29] Heather: And it didn’t make anything better. Looking back, I see this as being quite silly, but ketamine had always been helpful for me. 

[00:12:37] Arielle Duhaime-Ross: After around a month of experiencing life in this newly shimmering and unstable world, Heather turned to the class of drugs that had helped her remain functional for decades. Antidepressants. But that was different, too.

[00:12:51] Heather: My brain would no longer tolerate. SSRIs, SNRIs, really most medications, actually. And so I would have all of these awful, awful side effects. And it also increased all of the cognitive impairment, and it often increased the vision issues as well. I was desperate. I was desperate to speak to anybody who understood what this condition was like.

[00:13:23] Arielle Duhaime-Ross: It’s around this time that Heather visits an optometrist who gives her a clue. The problem isn’t her eyes. How did you eventually get diagnosed? 

[00:13:35] Heather: So I think I eventually Googled symptoms like, you know, vision changes, derealization following, psychedelics or something like that. And so that’s when I saw it and I saw a whole Reddit community and whatnot of people talking about HPPD.

[00:13:57] Arielle Duhaime-Ross: So, this part of Heather’s story, the part where she starts to find answers on the internet, I’m super familiar with that. Sure, the prevailing wisdom might be to go see a doctor. Don’t get your medical information off the internet. But I have a chronic illness that’s pretty poorly understood, too. I’ve also spent hours on Reddit reading about symptoms and how people got diagnosed, what treatments they’ve tried. Sometimes you just don’t have better options. 

[00:14:26] Heather: I was getting worse. 

[00:14:31] Arielle Duhaime-Ross: Heather says she made an appointment with the lead researcher who’d run the trial. She was hoping he might be able to help explain what was happening to her. But in the meantime, she turned to her friends. 

[00:14:42] Heather: I reached out to friends to be like, can you please help me? And so, it was a friend that originally connected me through to a psychiatrist. And that was the psychiatrist who said to me, Well, you can’t have HPPD. Only people who abuse drugs get HPPD. And he made me read the title of an academic poster from across the room. And I read it, and he goes, See, your vision’s fine.

[00:15:09] Arielle Duhaime-Ross: Eventually, Heather found a specialist. 

[00:15:12] Heather: There was only one neurologist who was willing to see me, who eventually went to work for a psychedelic drug company. I had an MRI and, uh, I believe it’s an EEG. And so, based on the fact that they didn’t yield anything of significance, he said, you have HPPD. 

[00:15:30] Arielle Duhaime-Ross: Right. You had already seen an eye doctor, so now they’re looking at your brain, they don’t find anything specifically, and so by process of elimination, that’s how you got diagnosed?

[00:15:42] Heather: Yes. 

[00:15:43] Arielle Duhaime-Ross: Is that how most people get diagnosed? 

[00:15:45] Heather: Yes, and a lot of people really struggle to get any sort of diagnosis. They can’t get care or they feel stigmatized and they don’t want to report what’s going on. 

[00:15:54] Arielle Duhaime-Ross: I spent a bit of time on the HPPD subreddit. I saw users talk about how challenging it is to get a diagnosis and why, for various reasons, many often don’t seek one out at all. Heather did. 

[00:16:08] Heather: I thought that I would feel validated, but I didn’t. particularly because there wasn’t a firm plan of treatment that I knew was going to help me, and at the end of the day, having a label. It didn’t really change my experience in any way. 

[00:16:27] Arielle Duhaime-Ross: The experts I’ve talked to have told me the same thing. There is no slam dunk definitive treatment for HPPD. Some medications can alleviate certain symptoms, but some can also make them worse. So it’s a lot of trial and error. No guarantees. Did the study researchers learn about your diagnosis? Did you tell them? 

[00:16:48] Heather: I did. And what added insult to injury is that they had written a paper on HPPD.

[00:16:56] Heather: And still, they did not offer to help, they did not offer to meet with me again, they did not offer to refer me to anyone specifically. 

[00:17:06] Arielle Duhaime-Ross: So you did get a reply? 

[00:17:08] Heather: Yes. We will record it. We will make a note. 

[00:17:12] Arielle Duhaime-Ross: Okay. And so, if they said they would make a note, then, then it must be in the study, right? Because they did publish a study after this, right?

[00:17:19] Heather: They did. 

[00:17:20] Arielle Duhaime-Ross: Okay. And Is it in, you know, did they mention this adverse event in the study? 

[00:17:25] Heather: No. 

[00:17:25] Arielle Duhaime-Ross: No.

[00:17:26] Heather: No. 

[00:17:26] Arielle Duhaime-Ross: The results of the clinical trial were published two years later, in 

[00:17:33] Arielle Duhaime-Ross: March of this year. The study doesn’t mention HPPD. This may be because the study’s follow up period was six months long, a decision that would have been made before the trial even started. And Heather, she says she didn’t get an official diagnosis until after that six month period was over.

[00:17:51] Arielle Duhaime-Ross: When I reached out to Braxia Scientific and the trial’s principal investigator for comment, they didn’t respond. The study does mention that participants experienced certain visual side effects, including blurred vision, but the researchers also write that most of the side effects experienced by participants, including all of the visual side effects, were quote, resolved within 48 hours of receiving a dose.

[00:18:16] Arielle Duhaime-Ross: Heather says her symptoms still are not resolved. Was there ever any question in your mind that psilocybin was in causing these symptoms and this illness? 

[00:18:29] Heather: It’s a good question. I think it was really hard for me to come to the realization that psilocybin wasn’t this magical tool for healing. And if I hadn’t drank the Kool Aid, so to speak, maybe I could have prevented myself from going this far down this path.

[00:18:56] Arielle Duhaime-Ross: After the break, what exactly is HPPD, how it became a diagnosable condition, and what scientists know about the risks of developing it?

[00:19:18] Dr. Henry Abraham: People oftentimes assume, oh, this guy’s an old acid head and he, that’s why he wanted to get into it. He probably has HPPD himself. No, none of that is true. I’m Henry David Abraham. 

[00:19:30] Arielle Duhaime-Ross: Dr. Henry abraham is known for a bunch of things. 

[00:19:34] Dr. Henry Abraham: I’m a physician, I’m a former pediatrician, and I am a lifelong psychiatrist studying substance abuse and its consequences.

[00:19:44] Arielle Duhaime-Ross: There’s his anti nuclear war work, which led him to write the Constitution for an organization that won the Nobel Peace Prize in 1985. And then there’s the crucial role he played in making HPPD a diagnosable condition. [00:20:00] 

[00:20:00] Dr. Henry Abraham: I’ve spent decades talking to people with HPPD and what they tell me is that there is a characteristic cluster of visual disturbances they can’t get rid of.

[00:20:14] Arielle Duhaime-Ross: So were you the first person to describe HPPD as this long term disorder? Did you name it? 

[00:20:21] Dr. Henry Abraham: I was the first person. I didn’t name it. I was a traditionalist and I called it LSD flashbacks. 

[00:20:27] Arielle Duhaime-Ross: If you had HPPD prior to 1987, you couldn’t get an official diagnosis, because none existed. Symptoms that resembled HPPD were often instead referred to as flashbacks.

[00:20:40] Arielle Duhaime-Ross: But flashbacks weren’t really understood. Abraham played a big part in changing that. Do you remember the first time that you spoke to somebody who, who claimed to have these visual disturbances? What year was that? 

[00:20:54] Dr. Henry Abraham: So it was probably in, in the summer of 1971. I was a psychiatric resident at Harvard. I was working at night in the emergency room. We had a psychiatric emergency room, which was really a wonderful place for people who were really acutely sick to come to. It was actually after the, um, what I would call the hallucinogenic epidemic of the 1960s that started at Harvard by Timothy Leary and others.

[00:21:26] Dr. Henry Abraham: That was in the very early years of people thinking this stuff is great and you can change minds and personalities and, and it goes away after, you know, five or 10 hours and, uh, wow, let’s, let’s see what we can do with this. And they would come to me and, among other things, they’d say, Well, I tripped on this drug and, and now I continue to have visual disturbances. Can you make them go away? 

[00:21:49] Dr. Henry Abraham: And no one seemed to be paying attention to these people because they, you know, they were, they weren’t schizophrenic, they weren’t depressed. And so what was going on here? 

[00:22:00] Arielle Duhaime-Ross: That. The bit about these patients not displaying any symptoms of schizophrenia, that’s important. Because it helps inform what HPPD is not. It’s not a form of psychosis. 

[00:22:12] Dr. Henry Abraham: And so I began sitting with these people and it was one after another. 

[00:22:17] Arielle Duhaime-Ross: So anyway, Dr. Abraham is spending more and more time with these patients. 

[00:22:24] Dr. Henry Abraham: I remember some of these cases really quite vividly, um, just because of the, the dramatic presentation of their, their complaints. Um, one patient came in and, um, saw a flashing of white light, um, like a flashbulb and it would happen again and again and it just didn’t stop. I, I remember that case very well. 

[00:22:51] Arielle Duhaime-Ross: When you’re encountering these individuals for the first time, I’m talking like the first five patients that you encountered with these complaints.

[00:22:58] Dr. Henry Abraham: Okay. 

[00:22:59] Arielle Duhaime-Ross: Are you immediately thinking, it’s the psychedelics or what’s going through your mind here? 

[00:23:04] Dr. Henry Abraham: Oh, they, they would tell me. I mean, what was going through my mind is the patient is always telling me the truth and you should listen very closely and take notes. Um, what, what do you got? Show me, man. Uh, and when did it begin?

[00:23:18] Dr. Henry Abraham: And did you have it before you tripped? And the answers were all consistent. I never had this before I tripped. It happened a few days afterwards. It happened even a month or two afterwards. And it has continued to the present. 

[00:23:32] Arielle Duhaime-Ross: These conversations. This is how Abraham starts documenting the occurrence of HPPD and how it presents in people. Well, that and the drawings. 

[00:23:44] Dr. Henry Abraham: I said, look, I have colored pencils. Can you draw me what you see so I can see it? Um, and they began giving me. Pictures, drawing pictures that were the same one after another. They, you know, they would talk about seeing the air and they would draw dots and one guy would come in after another drawing dots and, and it was really, really, you know, I said, Hey, there’s a, there’s a real disorder here.

[00:24:05] Dr. Henry Abraham: So then the next step was, well, it’s a real disorder, but, uh, can you pin it down objectively? I mean, a picture is a picture, but, but can you really get true data? 

[00:24:15] Arielle Duhaime-Ross: In the mid 1980s, he’s one of the few researchers studying both people who have used LSD and what would eventually become known as hallucinogen persisting perception disorder.

[00:24:26] Arielle Duhaime-Ross: And he realizes a few things. First, the amount of LSD someone takes doesn’t seem to predict the development of these flashbacks. And second, the symptoms can last a really long time. It’s observations like these that he uses to create the first set of diagnostic criteria for HPPD. 

[00:24:46] Dr. Henry Abraham: I submitted these criteria for the inclusion in the diagnostic manual for the American Psychiatric Association.

[00:24:54] Arielle Duhaime-Ross: The DSM for short is basically the diagnostic bible for mental health clinicians. 

[00:24:59] Dr. Henry Abraham: And the editor at the time said, you know, this is not a flashback. 

[00:25:05] Arielle Duhaime-Ross: According to Abraham, that editor basically points out that there’s nothing flash like about symptoms that can linger for years. And so finally, in 1987, HPPD appears in the DSM for the first time, under the name post hallucinogen perception disorder.

[00:25:22] Arielle Duhaime-Ross: The name HPPD, which drops the post and adds persisting, doesn’t show up until the fourth edition of the DSM, which got published in 1994. That is how HPPD 

[00:25:35] Dr. Henry Abraham: ultimately was encoded in the Diagnostic Manual and it’s been there ever since. 

[00:25:41] Arielle Duhaime-Ross: As for the whole flashback thing, Abraham says it’s a good thing that that name didn’t end up in the DSM.

[00:25:47] Dr. Henry Abraham: Flashbacks, you know, names can be very powerful, but they also can be misleading. I think the HPPD thing was sort of a mouthful, and I objected to that, but it was accurate. 

[00:26:00] Arielle Duhaime-Ross: Abraham goes on to publish a bunch of studies on HPPD over the next few decades. 

[00:26:05] Dr. Henry Abraham: We’ve measured changes of the brain’s electrical activity, uh, in the brain in people with HPPD compared to controls.

[00:26:14] Dr. Henry Abraham: And most interestingly, those changes of electrical activity are found in the parts of the brain that manage visual information. And the back of the brain and the sides of the brain. So I think in my way of thinking, it’s pretty clear that this is a disorder that takes place in the brain. 

[00:26:36] Arielle Duhaime-Ross: Dr. Abraham, what do we know about what causes HPPD?

[00:26:41] Dr. Henry Abraham: Oh, that’s a toughie. Um, uh, well we know that hallucinogenic drugs cause HPPD. I think that’s, uh, uh, pretty clear, um, LSD, psilocybin, MDMA, or ecstasy. 

[00:26:56] Arielle Duhaime-Ross: Other drugs have also been linked to HPPD, including mescaline, [00:27:00] ketamine, and even cannabis. So it’s definitely a good thing that HPPD didn’t end up with the name LSD flashbacks.

[00:27:07] Dr. Henry Abraham: And my general thinking about HPPD is it’s a disorder in which the brain can’t shut off visual noise. We see things all the time that we don’t mentally record because it’s junk and the brain is very good at filtering that out. But HPPD is an illness where the filters are damaged. And they can be damaged temporarily, or they can be damaged permanently when information comes in, which we ordinarily filter out like dots in the air. And we say, well, you know, you, we don’t, we say we don’t see them, um, but HPPD people do see them. 

[00:27:51] Arielle Duhaime-Ross: So it’s the brain taking in too much information and not filtering out the noise for a long time. 

[00:27:55] Dr. Henry Abraham: That’s exactly right. 

[00:28:00] Arielle Duhaime-Ross: As the years went on, fewer patients were coming in with the condition. Abraham says that’s probably because psychedelics were banned in the U. S. and fewer people were taking them, or willing to admit to taking them. So his attention was drawn elsewhere, to substance abuse. But given his history on HPPD, I wanted to get his opinion on Heather’s case.

[00:28:22] Arielle Duhaime-Ross: So, if somebody were to tell you, I was part of a clinical trial, um, in which I took psilocybin on three occasions, and, um, following the third occasion, I I developed these visual disturbances and have been suffering from these visual disturbances for months since then. What will your reaction be to that?

[00:28:44] Heather: Well, uh, I, um, I believe that the person is telling the truth until proven otherwise. I have a principle, and that is, there is always some element of truth in the clinical story. We are embarking on a series of experiments, ethical and otherwise, in which HPPD will surely be caused by, um, the well meaning doctors and clinicians who are using these drugs.

[00:29:18] Arielle Duhaime-Ross: Even though Abraham is now semi retired, he still gets contacted by psychedelic companies who want to know more about HPPD. I was contacted by one company that plans to market these drugs, uh, they knew about HPPD. And they said, how can we predict who’s going to have it in advance? And I said, well, that’s a great, great question.

[00:29:37] Arielle Duhaime-Ross: Um, I don’t know the answer to that. He said, how about if we do a study of the entire human genome? Um, you know, study the entire human genome and see if we can pin down the genes that HPPD people have. 

[00:29:53] Arielle Duhaime-Ross: But a lot of the HPPD related emails he gets are from people struggling with the disorder trying to get answers.

[00:30:01] Dr. Henry Abraham: I can’t shut my computer off, and so they keep finding me, and I try to get, you know, point them in the right direction toward people who are closer to them, who know something about the problem. 

[00:30:11] Arielle Duhaime-Ross: The thing about looking into HPPD, for me as a journalist, is that there’s not much there. The research hasn’t exactly flourished since Abraham’s time, and nobody has done the kind of large, long term study that might get at some of the answers to the big questions like, what makes people susceptible to this disorder in the first place?

[00:30:32] Arielle Duhaime-Ross: But there does seem to be a small resurgence in interest from scientific researchers. 

[00:30:37] Dr. Harry McConnell: Dr. Abraham is really a sort of pioneer in this area, uh, and so I did have multiple conversations with, uh, with him to get a, a, a better understanding of, uh, of the disorder. 

[00:30:47] Arielle Duhaime-Ross: Dr. Harry McConnell is a psychiatrist and a neurologist based in Australia. Some of his most recent research involved a survey study where he and his colleagues documented the various other illnesses and [00:31:00] symptoms that tend to happen alongside HPPD. 

[00:31:04] Dr. Harry McConnell: What we’ve shown is that it is very common for people to have a variety of other symptoms. 

[00:31:08] Arielle Duhaime-Ross: Like anxiety. 

[00:31:10] Dr. Harry McConnell: Depression. 

[00:31:10] Arielle Duhaime-Ross: Dissociation.

[00:31:12] Dr. Harry McConnell: And other sensory perceptions such as tinnitus and migraine with aura. 

[00:31:17] Arielle Duhaime-Ross: But there’s still a lot that we don’t know. 

[00:31:19] Dr. Anneliese McConnell: The research doesn’t really exist yet to back up whether or not one of those things causes the other or they co occur. 

[00:31:28] Arielle Duhaime-Ross: That’s Annalise McConnell, one of the other co authors of the study. She’s a medical doctor, and also Harry McConnell’s daughter. They’re on a quest together to untangle this disorder. And one of the other big questions they have is how prevalent is HPPD? Because right now, researchers only have a very rough sense of that. 

[00:31:49] Dr. Anneliese McConnell: The official estimate from the DSM 5 is that HPPD affects 4.2 percent of all hallucinogen users. 

[00:31:57] Arielle Duhaime-Ross: If that estimate is accurate, that would mean that [00:32:00] about 1 in 25 people who use hallucinogens develop symptoms of HPPD to varying degrees. 1 in 25. That doesn’t seem rare, but the number cited in the DSM is probably not the most precise. The DSM itself states that the 4. 2 percent is an approximate number from an initial estimate, meaning that the number is probably just a little old. It also says that current estimates are, quote, unknown. 

[00:32:28] Dr. Harry McConnell: We haven’t really taken this into the 21st century, to be honest. Nobody’s looked at this systematically with neuroimaging. Nobody’s looked at this systematically with genetic testing.

[00:32:38] Dr. Harry McConnell: We want to understand the mechanisms. And if we understand the mechanisms, then that can absolutely lead to really realistic treatments. 

[00:32:44] Arielle Duhaime-Ross: Okay, so the symptoms of HPPD can last a really long time. We have no idea how many people are suffering from HPPD today, and you don’t even have to have a bad trip to develop symptoms. 

[00:32:58] Arielle Duhaime-Ross: So, okay, I feel like I should ask you this then. Do we know why? What kind of risk factors might cause somebody to develop HPPD or lead to somebody developing HPPD? 

[00:33:10] Dr. Harry McConnell: So at the moment we have, it can happen to anyone, anytime, and there is no real way to screen, no way to say that somebody is more or less at risk.

[00:33:18] Arielle Duhaime-Ross: How in the heck has this flown under the radar for so long? Shouldn’t everybody be aware of this, and especially, uh, researchers who are working on psychedelics? What’s going on here? 

[00:33:29] Dr. Harry McConnell: Well, I, I mean, I think it’s, it’s about awareness. It’s by no means a rare disorder whatsoever, but it is an uncommon disorder, and it’s not one that’s typically, uh, uh, taught in, uh, you know, to, uh, psychiatry residents, or to medical students, or to nursing students, uh, or, uh, neurology residents.

[00:33:48] Arielle Duhaime-Ross: What’s the outlook for patients diagnosed with HPPD? Do they get better? 

[00:33:54] Dr. Anneliese McConnell: A lot of people do get better. For many people, the impact of the [00:34:00] symptoms becomes lesser and lesser as they go throughout their lives. For some people, it stops entirely. 

[00:34:05] Arielle Duhaime-Ross: What would you say to a listener whose reaction is, you know, this is this is the first time that they’re hearing about HPPD maybe, and maybe they’ve taken psychedelics before, maybe they’re actually quite acquainted with with psilocybin or LSD.

[00:34:21] Arielle Duhaime-Ross: What would you say to a listener who says, this, Putting such a large emphasis on HPPD in a, you know, dedicating an entire episode to HPPD, um, that that might come across as, as fear mongering. What would you tell them? 

[00:34:38] Dr. Anneliese McConnell: I don’t think we’re talking about fear mongering so much as appropriately talking about a very real risk of something that’s not talked about enough.

[00:34:49] Dr. Anneliese McConnell: I think that anyone who uses psychedelic drugs should be as informed as they can be about the risks of doing so. Um, I think that it allows people to make the most informed decisions about whether or not they should take the drug, whether we’re talking about recreationally or therapeutically. 

[00:35:07] Arielle Duhaime-Ross: I put a similar question to Dr. Abraham when we spoke. 

[00:35:11] Arielle Duhaime-Ross: How should people understand the risk of HPPD? 

[00:35:15] Dr. Henry Abraham: So it’s a risk, and I think people should be free to make their choices, um, but they should accept the responsibility of the consequences of their choices, and they should try to be smart about it. 

[00:35:29] Arielle Duhaime-Ross: Yeah, I guess, I guess the one thing that I would add to that is just, it’s hard to take responsibility for your choices if you don’t know that HPPD is a risk, right?

[00:35:39] Dr. Henry Abraham: Right. Right. If you’re involved in a research protocol that does not mention HPPD, it’s not a complete protocol. And you should, uh, tread carefully. If they’re being honest and saying, look, this is a low risk, but you could get this thing, then you know about this problem. You know what the risks are [00:36:00] as far as you can, and you take your chances.

[00:36:04] Arielle Duhaime-Ross: I really wish I could have gotten any of the researchers I spoke with to give me some sort of risk assessment strategy. Just any kind of information that would help people decide if they might be at risk for HPPD. But none exists, and that sucks. It’s not the researcher’s fault, but I don’t love it. And now, after reporting on Heather’s story, I’m pretty much at a loss as to how to talk about the risk that may be involved in taking some of these drugs.

[00:36:33] Arielle Duhaime-Ross: So I went back to the person who, to me, felt the most authoritative. 

[00:36:38] Heather: I think that we need to treat psychedelics as friends. Fire. Fire can be incredibly helpful. It can be incredibly beneficial. It could also be incredibly dangerous if you don’t know how to handle fire. I see psychedelics in the same way, and so I think that we need to have a very measured discussion around, yes, psychedelics could be tools for healing, but they certainly aren’t without their risks.

[00:37:04] Arielle Duhaime-Ross: Heather’s not telling people, don’t do this. What she’s advocating for is more research and better education about the risks, which is sort of a remarkable stance to take, given her particular circumstances. 

[00:37:19] Arielle Duhaime-Ross: Are you experiencing any symptoms right now? You know, these visual symptoms? 

[00:37:25] Heather: Yeah. I mean, when I look at the wall behind my computer. I see visual snow. It’s shimmering when I look at my computer monitor. I see shimmering and slightly unstable vision. In terms of how I feel, I definitely feel like it’s hard to put thoughts together. It’s hard to access memories. It’s, it’s difficult to tell my story. I do feel, I do, I do feel very anxious. But I feel like it’s important to share and it’s important to get it out there. The degree of impairment is just so strong. Thankfully, patterns aren’t as problematic as they used to be. I used to get really, really nauseous when I saw patterns. I’ve done quite a bit of neuro rehab and vision training, um, so I can read more and For at least a good year, year and a half, I just continually felt like I was drowning and white knuckling through life. And it’s only recently that I’m starting to feel like, okay, I can tread water. I don’t know if I’m moving forward yet, but I’m starting to tread water 

[00:39:03] Arielle Duhaime-Ross: This episode was reported and produced by me, with help from Cassidy Rosenblum. Special thanks to Jules Evans.

[00:39:19] Arielle Duhaime-Ross: Altered States is a production of the UC Berkeley Center for the Science of Psychedelics and PRX. Adizah Eghan is our Senior Editor. Jennie Cataldo is our Senior Producer. Our Associate Producer is Cassidy Rosenblum. Our Audio Engineers are Tommy Bazarian and Terrence Bernardo. Fact Checking by Graham Heysha.

[00:39:38] Arielle Duhaime-Ross: Rotating BCSP Script Readers are Michael Pollan, Michael Silver, and Bob Jesse. Our Executive Producers are Jocelyn Gonzalez and Malia Wollan. And our project manager is Edwin Ochoa. I’m your host, Arielle Duhaime-Ross. Be sure to subscribe, rate, and review Altered States wherever you get your podcasts. [00:39:57]

Arielle Duhaime-Ross: Most well known psychedelics remain illegal around the world, including the United States where it is a criminal offense to manufacture, possess, dispense, or supply most psychedelics with few exceptions, Altered States does not recommend or encourage the use of psychedelics or offer instructions in their use. We’ll be back next week.