One day in 2012, Jimmy* woke up hallucinating. He could see visual snow and floaters, objects leaving traces in the air and star bursts.
“It scares you stiff,” says the 30-something Melburnian, who had been a “pretty heavy user” of drugs, mostly MDMA. He hoped it was temporary but he's been seeing them ever since.
The effect on his life has been massive, he says. “I was a bit of a party animal, I'd go out every week with the boys – not get on the gear every week, but always go out, social drinking, music festivals. None of that anymore.”
He went online and within five minutes had an explanation that detailed an obscure disorder called Hallucinogen Persisting Perception Disorder (HPPD). A lack of research means the diagnosis rate is unknown, but the website HPPD Online has 40,000 registered members and 9,000 unique visitors each month.
HPPD is a neurosensory visual disorder but, unlike in schizophrenia, sufferers are aware that they're experiencing a hallucination. The effects range from mild disturbances to vertigo, depersonalisation, panic attacks and crippling anxiety.
The effects can last decades.
“It can be a death sentence,” Jimmy says. “A lot of people aren't strong enough to deal with it. It's very full-on, especially the first 12 months. You get a lot of anxiety and depressions – I faced them both myself and it's a very hard hurdle to get over.”
The effects can last decades.
Toby*, 38, from NSW has had HPPD since he was a 15-year-old Adelaide schoolboy. He'd been a marijuana smoker for about a year, when one night he was forced into taking LSD.
“I woke up the next morning and said I can still see all the visual stuff,” he says. Toby has been experiencing vivid visual hallucinations ever since: moving objects, halos around people's heads, traces, psychedelic colours and whirlwinds eating into objects.
The colour distortions are like looking through a kaleidoscope. Things are worse at night when there's little definition between objects; then, the visuals are all he can see.
Frank*, from US-based HPPD lobby group Neurosensory and Neuroregenerative Research Foundation, tells SBS that a “good percentage” of those with severe symptoms kill themselves rather than “deal with a lifetime of enduring neuropsychiatric trauma”.
He says the drugs ecstasy, LSD, psilocybin (magic mushrooms), synthetic cannabis (aka “Spice”), DMT and 2CE are implicated in causing HPPD, including “generally all hallucinogens used recreationally”.
The lack of awareness of the condition means sufferers are often misdiagnosed.
“The patients I see in consultation often have seen an average of six other medical specialists before they found their way to my office,” says US HPPD expert Dr Henry Abraham.
The colour distortions are like looking through a kaleidoscope. Things are worse at night when there's little definition between objects.
Frank* is pushing for advocacy and research. He says regenerative medicine might be the way forward for treatment as current approaches using the “entire gamut of medications” have had mixed results.
Toby is in contact with the UK's Beckley Foundation, a drugs policy research group, which is looking at setting up research into how the condition is caused. There may be genetic testing in the hopes of discovering a cure or effective treatment.
Jimmy's GP hadn't heard of HPPD and gave him drugs for his anxiety. Jimmy has continued working, though he tires more easily, and very few people know what he's enduring.
“If you go to a doctor's and say I can't work because I've got HPPD they just look at you like you're an ostrich,” he says.
Leading a healthy lifestyle and not even taking over-the-counter medication helped stabilise him.
Toby has tried “just about every medication possible” to cure himself. He spent 27 days in the sauna of a Sydney detox facility taking massive doses of a B vitamin to try and 'flush out' residual traces of drugs, but it made no difference.
Those with severe symptoms kill themselves rather than “deal with a lifetime of enduring neuropsychiatric trauma".
He has abused alcohol, valium and clonazepam – an anti-seizure medication – to stave off the symptoms. He has overdosed on multiple occasions and was pronounced clinically dead in an Adelaide hospital when he was 29.
Toby credits his survival to looking after his mind, body and soul. He no longer drinks or takes any drugs, and has investigated esoteric practices such as shamanic healing techniques.
He was taken to visit a holy man in India who left him with a profound faith in a higher power, if not a Christian god, which has helped him survive.
Toby is currently being treated by a Brisbane neuropsychiatrist who has recommended a healthy lifestyle and various therapies, including meditation.
“He says it's not a mental illness,” says Toby. “It's no different from someone being partially blind.”
His HPPD has left him isolated. “I've been through so much – I'm different from the average young man,” he says.
“It's probably harder for me to relate to regular people. I can't complain, obviously I did some stupid shit.”
Toby's hallucinations meant he had to leave school in Year 11. His condition gets so bad he can end up on the floor in tears.
“It's not a mental illness. It's no different from someone being partially blind.”
He knows people who take drugs recreationally in Sydney, but said they don't understand what HPPD is, or how severe it can be. Only his parents and a few fellow sufferers know what's happening to him.
“Some people would sympathise, some would say I was stupid for doing it in the first place. I was young and stupid.”
But having the LSD forced on him was “very uncool”, he says. “For a very young boy, that should not have taken place. The world is not always a pretty place. There are some very bad people out there.”
Jimmy says many people would think “that's what happens” when you take drugs, and that knowing about HPPD wouldn't have stopped him – then.
“Everyone knows the risk,” he says. “Maybe not this in particular ... you roll the dice and I had a bad hand.”
He doesn't dwell on his condition and hopes it'll clear on its own. “In my head I've accepted it. There's not much I can do about it, you get busy living or get busy dying.”
* Names have been changed.