It’s a condition described as a living hell by sufferers, and it’s marked by stigma and shame.
WARNING: This story discusses suicide and drug use and may be distressing for some readers.
Sheree da Costa lost her son Joey to suicide and believes he would still be alive if he hadn’t developed hallucinogenic persistent perception disorder (HPPD) as a teenager.
“That was the actual tipping point for Joey,” she said.
“It just made everything else he was battling just far too difficult. He just was exhausted by the end.”
HPPD results in disturbed vision, where a sufferer may constantly see visual snow, haloes or trails.
Many also experience out-of-body sensations and extreme anxiety.
It’s triggered by the use of psychedelic drugs and has been described as the “trip that never ends”.
With the use of illegal drugs on the rise and the emergence of psychedelics in the treatment of mental health disorders, there are calls for greater awareness and more research into the condition.
Sheree said her son’s experience of HPPD was “a living hell”.
Joey developed HPPD after taking a psychedelic drug at the age of 17 when he was in his final year at school, affecting his vision.
“Where school was concerned words were starting the slide off the page so he couldn’t study, he couldn’t read, and reading was something that he was very good at,” she said.
“He couldn’t write because he couldn’t really see what was on the page.”
Joey dropped out of school and eventually told his parents, who tried to help as much as they could.
“But to be honest we were in the dark as well until we started to do research of our own,” Sheree said.
“Even to us it seemed hopeless because, where do you go? Especially here in Australia.”
Ms da Costa said she and Joey often talked about raising awareness about HPPD together.
Now she is advocating on his behalf to call for more research into the condition.
“What we need to know is who it will affect. Are there markers for it?,” she said.
What is HPPD and is there a cure?
There are two types of HPPD: type 1 is characterised by brief “flashbacks”; type 2 sufferers experience chronic symptoms that can last months or a lifetime.
Researcher Anneliese McConnell said HPPD was reported to affect about 5 per cent of hallucinogen users, but she thinks the real numbers are much higher.
“It’s not a small population we’re talking about,” Dr McConnell said.
“Some of those people are affected really significantly. It can have a really debilitating impact on their everyday lives.”
HPPD is triggered by drug use, with lysergic acid diethylamide, or LSD, the most common psychoactive drug associated with the condition.
But Dr McConnell said there were a number of drugs associated with the condition.
“Psilocybin, magic mushrooms, MDMA; there are even some cases documented with marijuana involved as well,” she said.
Unlike flashbacks, which involve reliving aspects of a drug trip, HPPD only affects a person’s vision and those with the condition are aware their perception is not normal.
There is no cure for HPPD.
It can be treated with a variety of different anti-epileptic and psychotropic drugs, but there are no studies to give a clear evidence base as to how effective the treatments are.
Stuck in a nightmare
Jack* (not his real name) developed HPPD after his drink was spiked with LSD late last year.
“Some people reckon it’s cool to be tripping every day, but it’s terrible. You want it to stop every day.”
He said that while he’d tried LSD and magic mushrooms recreationally before, having his drink spiked was unlike any of his previous experiences.
“This was like 100 times stronger. It was just sort of like another level,” he said.
When the trip ended, the visual effects of HPPD remained. He experienced seeing visual snow, “just like a TV static over everything” and afterimages, “if I move my hand in front of my face I see like 100 hands”.
Jack said having HPPD was like constantly wearing 3D glasses or being inside a computer game with poor graphics.
“Nothing feels real. It doesn’t feel like you are inside your body or that the outside world is real,” he said.
“It’s like you are stuck in a nightmare.”
Jack initially experienced panic attacks that could last up to three hours.
“Now that I am stuck like this and I know there is nothing I can do about it the panic attacks have stopped,” he said.
He said he no longer socialises and has only recently been able to work, albeit on much reduced hours.
“My thoughts don’t line up properly with my actions.”
Jack said antipsychotic medications had helped, but he believed there should be more information about the risks of taking hallucinogenic drugs.
“When people take pills that are laced with rat poison … [and] a bad batch goes around they put that all over the news, but there is nothing about psychedelics at all and what they can do to you.”
Raising awareness and reducing stigma
Madeleine Quigley’s son Max has been living with HPPD for 11 years.
“It’s been heartbreaking, incredibly heartbreaking. My son has lost most of his 20s,” she said.
Max developed HPPD after taking LSD at a dance party when he was 18.
As well as visual disturbances, Max has experienced other symptoms.
“He’s had depersonalisation … he had extreme anxiety, extreme depression, tinnitus, brain fog,” she said.
Ms Quigley said her son no longer went out and had to take significant breaks from work.
“It’s been horrendous to watch how much this has affected his life,” she said.
Ms Quigley is keen to raise awareness of HPPD.
“I think there is a huge stigma about any sort of drug-induced condition,” she said.
“I’m actually not afraid to talk about it because the reality is that young people are going to continue to use drugs.
“It could happen to your brother, sister, niece, nephew. It could happen to someone you know and someone you love.”
Ms Quigley is particularly concerned about the growing popularity of the “Cali sober” movement, which for some people involves cutting out alcohol but using marijuana or psychedelic drugs.
She’s also worried about the emerging use of psychedelic drugs to treat depression.
“If those things are going to help people with mental health conditions … I support that, but we need to do our due diligence,” she said.
More research needed
Much of the existing research on HPPD is focused on describing the condition.
Psychiatrist Harry McConnell said a lot more research needed to be done into the basic mechanisms of how it occurred, who was at risk and treatments.
He and his daughter Anneliese McConnell — a researcher at the Western Sydney University School of Medicine — have looked into whether HPPD is associated with other disorders such as migraines accompanied by visual auras or tinnitus.
“It’s difficult to get funding in this area. I think it’s difficult to get funding in a lot of areas related to drug and alcohol use and HPPD is no exception here,” he said.
Harry McConnell said an investment into HPPD research was critical as the use of psychedelics for the treatment of psychiatric disorders was on the rise, along with a rise recreational drug use.
“We have seen cases where this (HPPD) can occur in people taking part in randomised controlled trials and even people who are microdosing,” he said.
“It’s really important that people understand the risks of the drugs that they’re taking whether that be recreationally or therapeutically … and can make informed decisions,” Anneliese McConnell said.
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