Living with Hallucinogen Persisting Perception Disorder (HPPD)
As many as four percent of people who try psychedelics may be disturbed by continued visual distortions after a trip. We need to learn how to help people live with HPPD, writes Ed Prideaux.
It’s been around seven years since I began exhibiting the symptoms of ‘Hallucinogen Persisting Perception Disorder’, or ‘HPPD’. It’s been four since ‘Depersonalisation-Derealisation’ (DP/DR) set in. I had never heard of HPPD or DP/DR before buying my first tab of 1-P LSD from the ‘Royal Alchemist’, a grey market site that sold a rich pharmacy of research chemicals. Being an unusually idiotic seventeen-year-old, and looking for a ‘peak experience’, I gobbled up the growing renaissance propaganda and deemed psychedelic drugs far safer than alcohol - and with very few risks. Even a bad trip could be fruitful, I’d read. So, what’s the hitch?
It was after my fourth trip on the 1-P - which metabolises into LSD in the body - that my illusion of safety was swiftly challenged. Sitting on the floor at school and waiting for registration to call, I saw some sparkles on the carpet. Soon enough, and over the succeeding few days, some walls were beginning to melt, or be painted with flashing lights, colours, and after-images. My bedroom cupboards splashed with purple-greenish auras, and breathed steadily on their hinges.
‘I’m seeing that blind melting, like it’s waxy. Sort of like wet putty,’ I nudged a friend in A-Level biology. ‘Can you see that?’
‘Uh,’ he said, turning around and turning back. ‘Nah.’
I probably typed in something along the lines of ‘visuals after acid trip’. There it was: Hallucinogen Persisting Perception Disorder, with its very own Wikipedia page. ‘HPPD is a non-psychotic disorder in which a person experiences apparent lasting or persistent visual hallucinations or perceptual distortions after a previous use of drugs.’ In a 2011 survey of psychedelics users published in Drug and Alcohol Dependence, 60% reported continued visual distortions after a trip, 20% reported them as being continuous for a period of time, and 4% reported finding them so intense as to be disturbing and upsetting.
Ah. Shit. That seems a lot like what I’ve got.
My friends weren’t very supportive. They found it hilarious.
‘You told us LSD was safer than drinking and now you’re basically still tripping,’ my friend Luke said.
‘Yeah. It's a shame, isn’t it?’
The isolation issue
The visuals would continue at high strength for several years. Perhaps the biggest problem was that I couldn’t tell people around me. Lacking friends I could rely on, it might have been nice to talk to staff at school for support: perhaps the chaplain, the matron, my favourite teachers. But they’d probably have told the school heads, who would probably have kicked me out. I was already on thin ice for several behavioural infractions, so my hand wasn’t too strong. How about family? Of course not. My parents had caught me on that fourth trip and were very, very unhappy about it. They’d even threatened to call the police. I didn’t tell my family for five years, all in all. The reaction wasn’t great when I did. It’s a curious kind of isolation to be in a shared setting - a Christmas board game, a trip to a restaurant, watching a Danish crime drama - and to be seeing something else entirely.
I didn’t tell a soul at university for the whole three years, either. I would come out to them one-by-one in time. Why didn’t I tell them? Similar to the reasons expressed by this seventeen-year-old ex-head, described in a case report from 1973. Describing flashbacks and depersonalisation since a “heavy dose of LSD”, the dishevelled and trembling high-schooler worried he was “weird” and a “freak”, and that people would think ill of him for “still tripping”. Thankfully, many of the people around me have been supportive and non-judgemental. It’s made me feel less alone. Yet others aren’t so lucky. Some may be shunned or gaslighted by their family after living with HPPD for years: told their condition isn’t really there, that it’s “in your head”. Work environments are especially testing. If you’re open about it, HPPD will doubtless stand against you among some bosses or in a recruitment process. A friend of mine with HPPD had to lie and tell his bosses it was Visual Snow Syndrome that was making him so anxious.
After coming out to my friends and loved ones, it took another few months to ‘go public’. A big influence was Carl Hart’s book Drug Use For Grown Ups. One of his prescriptions for our crazed attitudes around drugs is for the privileged to own up to the history and full effects of their drug use. I knew that HPPD needed de-stigmatising, and part of this was giving it a public face. I went to private schools. I had a financial cushion with my parents if things went wrong. ‘If not me, who - if not now, when?’ as the cliche goes. This came in sharper relief after publishing some higher-profile pieces on the drugs for the BBC and VICE. How could I write glittering articles on the ‘worldview changing drugs poised to go mainstream’ when I had HPPD? Why was no one talking about it? Weren’t people at risk here? So, I pulled the cord. I was already friendly with an HPPDer behind the scenes who had started the Perception Restoration Foundation, a nonprofit launched to raise awareness and funds for studies into HPPD, so I made a successful pitch to be their public advocate. They’re now funding my Master’s programme, which I pursued upon realising that my petitions for ‘more research’ could be well fulfilled by me.
The ‘free trip’ technique
Many people with HPPD have to learn the hard way that life goes on. You’ve got to accept what’s happened, or it’ll take over your life. When the symptoms first came on, it helped that I had quite enjoyed my acid trips - the witches, demon dogs, shadow people, and panic attacks notwithstanding - so the condition could provide a funky distraction. Bored out of your brain in assembly? Trip out to the big Jesus in the distance. Listening to music? Lie back and watch the magic colours. That won’t apply to everyone. Those who develop the condition after a bad trip may feel trapped and chronically re-traumatised.
It’s been noted since the earliest ‘flashback’ literature, though, that these symptoms can be entirely benign. Type in ‘enjoy HPPD’ on Reddit, and you’ll find quite a few results; likewise take a look at r/HPPDCirclejerk or r/HPPDPositivity, which (while relatively inactive) were founded to counter the hypochondria and negativity that can surround and dog the condition. Sophia Alcala, the moderator of the 11,000-strong r/HPPD, told me that it’s the “only support forum that actively encourages its members to leave.” Why? Because it seems the only people who’ll really understand are other sufferers. People are then sucked in and find themselves growing more and more obsessive.
Research from 2011 and 2010 likewise indicated that, among the respective 60.6% and 40% of their samples who noted these visual phenomena, 93% and 97% found them largely unobtrusive. Being subject to strong recruitment biases, these surveys likely under-estimate the number in distress. Yet these findings still prompt us to consider again how HPPD, as a diagnostic entity described in the DSM-5, is a condition characterised by distress and impairment: factors that, I believe, should be re-centered as our key clinical indicators, perhaps ahead of the visuals themselves.
Some people use these visuals as part of visualisation meditation and occult practice. I’ve had trouble getting through to ayahuasca communities, but someone told me that lasting visual phenomena are held in spiritual terms by shamans. There are cultural caveats in the DSM-5 for a range of conditions, yet there are none currently for HPPD. Perhaps this will change as psychedelic psychiatry matures.
Even if one does enjoy these visuals, however, and would rather they stayed, there’s no guarantee that this attitude will last over the long term. A recent study asked individuals just four weeks after a trip to see how they felt about their lingering visuals. Most were fine with it, but give it time, I say: this shit gets old.
I am no longer an enthusiast for psychedelic drugs. I have no desire to take them. I want to move on. Yet I am still living with the fingerprints of experiences taken as a teenager: a half-stranger with whom I share less and less with each passing year. We don’t know how long people’s HPPD tends to last, either. A 2001 estimate suggested that 50% of sufferers will recover within five years. If you’re not in that supposed magic half, HPPD can last decades; there are some who’ve had it since the 1960s. While future psychedelic therapies will surely provide much relief, how long must the follow-ups be to see their full range of effects? We already know that people can develop HPPD and related effects in ‘safe’ psychedelic settings. Heather, a 39-year-old from Canada, was the country’s first person to receive legal doses of psilocybin. By her third session - and with no effective warning from trial staff or knowledge of HPPD - Heather noticed some unusual perturbance in her vision. She sought further relief in an underground therapy session with a therapist friend, and later a legal ketamine session, before her condition flowered into full-blown HPPD. It’s been six months now.
This points at another thing HPPDers have to deal with: regret, shame, and the loss of compassion that follows ‘doing it to yourself’ - and not least through drugs. One of the ‘revelations’ of my LSD voyages was that one should lead a life of ‘no regrets’. I think that’s bullshit. Regret is inevitable. We have regrets because we make mistakes. Regret follows mistakes and missteps much as warmth follows the light of a bulb. Getting in touch with and feeling that regret is something I’ve had to do. Human sensation is already dominated by visual perception, but this dominance can give way to a colonisation with HPPD. Vision can be so strange and novel that we lost touch with - and steadily become dissociated from - our bodies. Getting better at interoception allows for grounding: ‘looking through’ my visuals, rather than ‘looking at’ or for them. And, as much as I despise the term, this whole process can be kind of… healing.
Embodied acceptance sits as part of the narrative arc people often follow with HPPD. There’s typically an initial surge of pain and overwhelm, followed by a long and winding road of acceptance. Perhaps certain lifestyle changes are made to manage the condition: abstinence, regular exercise, good diet, meditation, supplements, such that people might feel healthier for having contracted HPPD than otherwise. The process of dealing with HPPD over years can teach a certain resilience, too. It’s exhausting, especially when invisible to others, but your core gets strong when you fight to keep your head above water. It may encourage post-traumatic growth, not least if one’s HPPD occurred after a bad trip. A co-founder of the Perception Restoration Foundation, who has lived with HPPD effects since he was fourteen, looks at his past through the Stoic imperative of amor fati: love one’s fate, however troublesome it seems.
Part of the arc is challenging the more destructive narratives that the condition can vessel. Many express considerable fear that they’ve developed ‘brain damage’, ‘fried their brain’, or were stuck on a ‘never ending trip’: you can see rich indications of this in the limited case report literature around HPPD. Others are fearful that they are ‘going insane’, which also occurs with panic disorders and DP/DR, or specifically that they may be ‘developing schizophrenia’, a condition long-tied to and ‘triggered’ by psychedelic drugs in the culture. The schizophrenia concern is so common, in fact, that I wrote a blog about it to describe the differences to any fearful HPPD initiates.
In this respect, engaging with the tools and techniques of Cognitive Behavioural Therapy (CBT) was a personal game-changer - especially in the case of DP/DR. Is the world around me not real? Is it all in my head? Well, do I recognise that supermarket? Yes. Do I recognise that bus stop? I do. Is this feeling of unreality arising from a dispassionate place? No, I’m anxious. Why’s that? Too much coffee? Not enough sleep? Stressed at work? Too much screen time? All the above. The more one deals with the factors around the HPPD that make one anxious and aggravate symptoms - especially sleep - the more one might notice that their visuals are going down over time, or at least not deteriorating. They’ll probably notice, too, that they’re spending fewer days obsessively monitoring for them. Treating HPPD has a lot in common with somatic symptom disorders or OCD. It’s comparable to a kind of ‘visual tinnitus’. But people’s conditions will hugely vary from person-to-person, especially if ‘HPPD’ contains a wider range of problems caused by psychedelics. As well as the cross-pollination of HPPD and DP/DR, some researchers have suggested that HPPD is fundamentally related to anxiety and the arousal system. To echo the calls of Jared Lindahl and Willoughy Britton for meditation’s adverse effects, a ‘person-centred’ approach that accounts for everyone’s own context and phenomenology is vital. Diagnostic terms like ‘HPPD’ must be taken lightly.
Relevant here is ‘psychoeducation’, a core pillar of the CBT approach. Before I began researching HPPD in earnest, I had no idea that similar visual symptoms appeared in a range of non-drug conditions and even the variations of normal perception. I had no idea, either, that psychedelic drugs weren’t the only ones that could provoke persistent perceptual conditions - although the psychedelics, I would submit, bring specific symptoms and a higher risk. As well as being unnecessary, then, interpreting my condition as one of having ‘never come down’ or being ‘still tripping’ became rationally implausible.
It was doubly illuminating to realise that these thoughts weren’t just ‘my own’, but importations of anti-drug stigma. Another stigma is often at play here: sanism, or a phobia and aversion to anything in line with stereotyped notions of insanity. Consider that when we ‘see things’, we may default to the worst conclusions. We might think we’re ‘developing schizophrenia’. Yet hallucinations and visual disturbances aren’t that uncommon; they’re just not talked about outside of pathology. How would people’s experience of HPPD - and indeed hallucinatory conditions across the board - evolve if we opened up more about how ‘unsane’ we all are?
This has specific implications for psychedelia. Those same studies cited earlier suggested that 60.6% and 40% of their samples reported lasting visual phenomena. Yet how often is this discussed? Without knowing of that possibility, those with high trait anxiety especially may believe something has gone drastically wrong, and default to a self-diagnosis of HPPD. Likewise, it’s possible that some people may simply be noticing things that are ‘normal’, but are sensitised by the anxiety- and suggestibility-raising effects of drugs. It’s curious to note that anxiety is associated with visual disturbances similar to HPPD in the complete absence of drugs - and also that psychedelics could well raise baseline anxiety through their effects on the nervous system.
My new research project and the Foundation
All these factors have motivated my new research project into HPPD. I’ve launched an in-depth and anonymous questionnaire study - perhaps the most comprehensive yet devised - to understand what makes people with HPPD distressed. It will survey the role of destructive thoughts and monitoring behaviours, psychoeducational beliefs about HPPD, as well as the objective intensity of people’s visuals through graphic representations. I hope that my findings will inform a richer psychological understanding of the condition, which has been hitherto colonised by a brain-based biomedical model set on drugs and neurotoxins. Many with HPPD feel that there are ‘no treatments’, and sit waiting for a side-effect-free pill that could never come. Rather, by focusing on the anxiety and distress specifically, we see that tried-and-tested treatments and recovery tools from psychotherapy and attention training could be repurposed for HPPD: opening a mass of capacity and resources from our mental health system.
To ensure that would go well, though, we need responsible awareness of HPPD among users and clinicians. Not least if HPPD prevalence is anywhere near 1 in 25 - the statistic suggested by the 2011 study - awareness will provide informed consent for thousands of new psychedelic users. It also has direct harm reduction benefits: one study found that prior awareness mitigated against distress, perhaps because people were less likely to catastrophise or panic in uncertainty about strange new symptoms. Misdiagnosis with schizophrenia, migraine, or drug-induced psychosis is a serious concern. It can lead to misprescription with psychotropic drugs that make the HPPD worse.
To bolster these projects, the Perception Restoration Foundation is seeking funding. We need an injection of resources to stay operational. The Foundation hosts a Specialists Directory of HPPD-informed clinicians and care professionals, which needs expanding to meet existing (and probably growing) demand from sufferers. Together with the moderator of r/HPPD, we need cash to train new recruits to manage our Virtual Support Groups. We’re near the finishing line with our documentary, HPPD: Stuck In A Distorted World, which covers the real life stories of sufferers and aggrieved loved ones, as well as researchers on the front lines. A number of research projects are in the pipeline and in discussion but have struggled through lack of funding.
Even a single donation could make a big difference. If you’re interested, please email at email@example.com.
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