Around the summer of 2019, I was interviewed for a job in “B2B communications.”
The meeting rooms were fashionable and well-branded. The wallpapers were decked with pink blossoms and waterfalls. Being of sensitive mind, the tea had got me a little speedy—but the interview was going okay, all told.
Before I could improvise one particular answer, though, the boss’s head was suddenly bordered by a display of purple-green flashes and lightning bolts. Encircled by a fuzz of explosive particles, my visual field inflated and deflated and centered on her face like a fucked-up telescope. I was almost flung back in the chair.
By some miracle, I managed to stumble through an answer. I was offered the job a few days later.
The experience didn’t entirely surprise me. I had been living with visions like these for about three and a half years. My condition had taken a turn for the worse, however.
I wondered if I could ever tell anyone how weird shit was really getting.
Before that day’s end, my hands would look like those of an alien creature, the veins coursing with white electric blood, and my dad would turn a ghoulish neon green. I cracked up. Running upstairs, I shut myself in my room and lay on the bed. My consciousness seemed to waft towards a chest of drawers about three feet away.
Tension hummed in my belly. The sense of self had disappeared. Taking furious notes on a scraggly piece of paper—”My name is Ed Prideaux and I am a 21-year-old student,” over and over—I wondered whether the brain damage I had apparently sustained would last forever.
I also wondered if I could ever tell anyone how weird shit was really getting.
This was hallucinogen persisting perception disorder, or HPPD: a DSM-5 condition characterized by psychedelic-like effects that recur months or years after tripping. “Flashbacks,” in other words. The condition presents in more complicated ways: a range of somatic, cognitive and affective symptoms, and new kinds of visuals that weren’t necessarily seen in precipitating drug sessions.
I’d triggered my HPPD by eating two tabs of an LSD analogue, 1-P-LSD, as a 17-year-old. It was at my parents’ house and I had a fairly bad trip. I’ve since spent years trying to better understand HPPD through reading and, recently, in conducting my own study.
HPPD was codified off the back of work by Dr. Henry Abraham, who was stationed at Boston General Hospital in the early 1970s, a short tram ride from the campus where Timothy Leary had launched his Psilocybin Project about 10 years earlier.
Abraham saw streams of LSD users complaining of persistent visuals. Many of the symptoms they described—trails, “after-images,” flashes, visual static, patterning—are identical to those seen today, which suggests a stereotypical symptom profile.
Some people with severe HPPD are unable to work. Some have died of suicide.
HPPD-like symptoms do not seem entirely uncommon. A study of just under 2,500 people from Erowid found that around a quarter had developed some form of persistent visual. Around one in 25, or 4.2 percent, had found their visuals distressing enough to consider a visit to a doctor.
HPPD may be compared to “visual tinnitus”—an intrusive sensory disturbance that can go out of control. This is what matters in defining HPPD as a clinical disorder.
Abraham estimated that up to 65 percent of HPPD patients he saw lived with chronic panic attacks, 50 per cent major depression, and 25 percent alcohol use disorder. Abraham also observed that around 50 percent of patients would recover from their symptoms within five years, while some have them for decades. Some people with severe HPPD are unable to work. Some have died of suicide.
Sheree DaCosta is an Australian dancer whose son, Joey, developed HPPD after taking LSA (morning glory) seeds while an adolescent. After 10 years of struggle, Joey ended his own life, a trauma DaCosta has channeled into a new short film called Dancing With My Mother.
As part of my master’s degree program, I conducted a study using an in-depth questionnaire to better understand people’s patterns of distress.
I found that a significant minority of more than a quarter were impaired or very impaired: feeling trapped, struggling to enjoy life, and upset, anxious and tired.
I recruited 455 people with histories of HPPD-like symptoms. They were drawn mainly from the United States, United Kingdom and European Union, but also from India, Nigeria, Turkey, Uruguay, Uzbekistan and elsewhere, although a majority of respondents were cisgender white men.
I used a psychometric scale repurposed from the tinnitus literature to measure the degree of participants’ HPPD-related distress, and divided the scores into quintiles.
I found that most of the people in my sample were relatively unimpaired. Yet a significant minority of more than a quarter were impaired or very impaired: feeling trapped, struggling to enjoy life, and upset, anxious and tired.
More than a fifth of the very impaired participants self-described as disabled and unable to work.
I also sought to measure the intensity of people’s visuals using graphics of three stereotypical HPPD symptoms, like the one shown above. I expected that more intense visuals would correlate with more distress and impairment. Although I found some evidence to support this idea, investigation was rendered difficult by a lack of high-quality graphics. Personalized depictions of visuals may be available in time thanks to machine learning.
What was much more influential (and much more measurable) in the stats was a cluster of cognitive-behavioral phenomena, including feelings of obsession or self-hatred that people experienced around their symptoms.
Compared to people who were less distressed, those who were very impaired were highly likely to believe and worry that they were “going insane”, on a “permanent trip,” “to blame for [their] condition,” and that “no one will understand or want to help [them]” because their “HPPD was caused by illicit drugs.”
It doesn’t stretch the imagination to wonder why a condition associated with stigma-laden drugs would produce so much anxiety.
Seventy per cent of the very impaired people worried—frequently—that they “stare too much and must look weird” to others. The same proportion said they try to “‘act normal’” when experiencing symptoms and distressed inside. A majority of this group also indicated that they often opt not to socialize or pursue their hobbies during flare-ups. Around half (45.5 percent) constantly “check in on their visuals,”and more than three quarters “monitor if they’re changing” at least often.
A notable predictor of distress was the level of distraction: being unable to focus on tasks because of being drawn away by intrusive visuals. The self-punishment of “what if” was another: If only I could stop my past self taking drugs, I would be okay.
It doesn’t stretch the imagination to wonder why a condition associated with stigma-laden drugs would produce so much anxiety. Among the 45 percent of my participants who developed their symptoms by age 18, especially, many chose not to tell their parents, siblings, teachers, mentors and classmates, for fear of judgment and stigma. It took me five years to tell my family, and three years to let more than a few friends know, too.
This “masking” of symptoms is probably gendered to a degree, as seen with other diagnoses like borderline personality disorder. And it’s notable that among my participants, women were disproportionately represented in the group who were very impaired by HPPD symptoms—making up 31 percent of that group, compared with 14 percent of the whole study cohort.
And as seen in other HPPD studies, LSD emerged as the leading precipitant—if it’s really LSD, that is. Of more than one million tabs of “LSD” seized by authorities in Brazil from 2011-2017, only 18 percent exclusively contained the drug, according to a 2019 study—down from 100 percent in a study conducted in 2014. 25I-NBOMe and other research chemicals are known to be potential triggers of HPPD. And tentative clinical evidence suggests so far that unadulterated LSD isn’t more likely than MDMA or psilocybin to cause HPPD-like phenomena. This may help to explain the relative lack of HPPD reports from the 1960s, when LSD was probably purer.
The distress people with HPPD symptoms experience is profoundly related to the stigmatization of the drugs they used under prohibition.
That said, papers and case reports since the “flashback” days of the 1960s and ‘70s have shown people with HPPD symptoms worrying that others would view them as “freaks” with “brain damage.” And you can’t blame people for reaching that conclusion, when the clinical literature has largely stripped HPPD of its psychosocial context in prohibition, presenting it as a mere “brain disorder” of drug-induced neuronal damage.
In contrast, the distress people with HPPD symptoms experience is profoundly related to the stigmatization of the drugs they used under prohibition.
Over a third of the overall sample believed it probably or definitely true that they can never tell anyone else about their condition. And the people who were most distressed by their HPPD symptoms were most likely to feel they could never tell anyone.
Often, the only place where people can open up is support forums like HPPDOnline.com and r/HPPD, which respectively have 18,000 and 11,600 members. Yet online support may not be an adequate replacement for support from people who are closely involved in your life.
The marks of prohibition go deeper still. While defined by DSM-5 as a “re-experiencing” of psychedelic visuals—akin to a “permanent trip”—HPPD symptoms are often more complex and novel, and also appear in non-drug conditions like epilepsy, migraine-with-aura and visual snow syndrome (VSS). VSS in particular can present identically to HPPD: the visuals, dissociation, anxiety, tinnitus. Unlike HPPD, though, the VSS patient community benefits from an extensive global complex of philanthropic funding and researchers.
To maintain its rhetorical distance from HPPD (and the stigma), VSS has been defined explicitly to exclude “psychotropic” or “illicit” drugs in its possible range of causes and precipitants. This means that HPPD sufferers are largely excluded from VSS studies, psychiatric directories and prospective treatments.
In asking for concessions from his boss, he told them he had visual snow syndrome. Can you blame him?
Yet this separation conflicts with evidence that “drug-induced” conditions do not necessarily differ from those induced by other means. Evidence likewise suggests that non-psychedelic drugs like SSRIs and antipsychotics may be associated with HPPD-like symptoms. The common understanding of HPPD, the stigmatized “drug” condition, has now expanded to include all reports associated with “medication and recreational drug abuse.”
My own symptoms have now largely resolved—or at least, don’t bother me too much these days—but I’ve been glad to offer support to others when I can.
An old friend I last saw when I was 11 contacted me last year. He told me he’s been experiencing HPPD symptoms since he took acid, and wanted to talk. He was struggling at work—the pressure, the office, the lights—and had also been drinking too much. In asking for concessions from his boss, he told them he had VSS. Can you blame him?
Unless prohibitionist culture changes, the HPPD concept may be perpetuating the stigma it seeks to contain.
Image courtesy of Ed Prideaux