Perceptual difficulties/HPPD

Here are some practices people generally have reported to find helpful to cope with challenging psychedelic experiences:

• Speaking to friends and family or attending a peer support group
• Speaking to a therapist, especially one who is familiar with psychedelic difficulties (CBT is often effective for anxiety and panic problems, although some also say they are helped by somatic therapy exercises that help regulate their nervous system).
• Cognitive practices like compassionate self-talk, cognitive distancing, and especially meditation and prayer
• Embodied self-care practices like exercise, yoga, walking in nature or body relaxation
• Finding useful information online and in books (e.g. the work of Stanislav Grof’s or “Breaking Open: Finding a Way Through Spiritual Emergency” by Jules Evans and Tim Read)
• Journaling
• Engage in creative activities like writing, art-making, or music
• Some people find medication helpful. Additionally, although controversial and risky, some may find that a subsequent altered state experience can help resolve their difficulties. However, this method carries obvious risks and should be approached with caution.

It is essential to explore and integrate these strategies in a way that resonates with personal preferences and needs, seeking support from professionals or trusted sources as needed.

Heather's story 

Heather has suffered from depression for decades and has been on medication since she was 14. In 2021, she enrolled in a trial of psilocybin for depression in Canada run by a pharma company called Braxia. She says:

Right from the beginning, there were issues. First, they wanted me to taper off my medication on my own and I felt very uncomfortable about that, so I had to push to get a psychiatrist to help create a tapering plan. Even then, the process was very fast – under two months -  given that I've been on medication for most of my life.

Heather went for her first psilocybin session in December 2021, at Braxia’s research clinic outside Toronto. She did not find it the most conducive setting for a psychedelic experience. The centre is in what she describes as a ‘rundown strip plaza in a suburb of Toronto, two doors down from Braxia’s ketamine clinic’. Inside the centre was ‘a narrow room, with no windows, no plants, and no natural light’. She also notes that, prior to her first dosing session, she was disturbed by the fact that the room was so cramped that the couch couldn’t fit flush against the wall.

She had a ‘meet and greet’ with the therapists for the trial before her session. This being the middle of the pandemic, they were wearing masks. She was also given a consent form which said this about the risk of extended difficulties:

1) Transient recurrence of disturbances in perception that are reminiscent of those experiences during one or more earlier hallucinogen intoxication. This side effect is seen rarely with recreational use of psilocybin, and has not been reported in scientific studies done under supportive clinical conditions.
2) Worsening of mental state after psilocybin experience (very rare and not seen in similar studies).

Heather ended up receiving three psilocybin doses over the six months of the trial. She had positive experiences during her first two sessions, and saw some improvements and some new challenges. She says:

I didn't feel suicidal anymore. My depression lessened, but life felt very hard, and I started to get very anxious over time. I think it was probably from being off antidepressants…I was destabilizing, and the team knew that.

She had a third experience in May 2022. ‘I didn’t sleep the night before. I was incredibly dysregulated. I went in sobbing. One of the team members was late. Right from the first intro session I felt they lacked the empathy and care of the other teams’

She went ahead anyway as she thought it was now or never and the session couldn’t be rescheduled.

Heather recalls:

I said to them, can you please help me regulate myself? And they gave a couple of suggestions, and then I said it again later on, and they're like, ‘we've already told you how to do this’. One of the guides, a psychiatrist said, ‘we're not here to guide you. We're just here to make sure you stay safe’. I went into the dosing session feeling unsupported and uneasy.

The first two session teams had discussed the issue of touch with her, and what would be helpful and acceptable to her. The third team didn’t mention it, so Heather brought it up.

They seemed very taken aback by the idea, then finally agreed. We determined that the gesture for me needing touch would be me putting out my hand. Then, at a certain point early in the experience, I put out my hand and no one was there to take it. I had to say, ‘Can someone please hold my hand?’ And it felt like they begrudgingly did it. Given my trauma history, that was incredibly traumatizing for me. In the previous sessions, I felt cared for. With this team, it felt like they didn't want to be there, and I had to take care of myself. This feeling was pervasive throughout the entire experience. Later on in the day, I was struggling to pull over a small table so I could eat my lunch, and no one offered to help me, unlike in previous sessions. Overall, it felt like a yucky experience.

In the days and weeks after that third session, she noticed her vision had altered.

The sky looked different. It was shimmering in a way that I couldn't really describe. I went for coffee with a friend, and she was wearing a black-and-white striped shirt. It was making me nauseous, like the stripes were moving. I also felt extreme anxiety, to the level of depersonalization, but I was still committed to psychedelics being the road to healing. At least I wasn’t depressed anymore. I was still committed to psychedelics as my route to healing.

Once the clinical trial had ended in June 2022, Heather still felt anxious and altered.

After that, things got much worse in terms of the level of distress I was experiencing. A week later, I still had some prescription ketamine that had been prescribed to me. I took it, hoping it would lessen my distress. That’s when the shit just hit the fan. My vision got so much worse in terms of colours, visual snow, blurred vision, and an inability to focus. I would go into these hyperarousal states, unable to regulate myself. I was taking benzos all of the time. I feel like something happened to my brain. I fried my nervous system, essentially, and have been struggling ever since then.

She’s definitely better than she was, but has been dealing with heightened anxiety, and now has formal diagnoses of PTSD, GAD and Hallucination-Persistent Perception Disorder (HPPD) – a disorder which supposedly never happens to participants in clinical trials or ‘safe settings’, and which one doctor told Heather ‘only happens to people who abuse drugs’.  Since the trial, she has been unable to tolerate SSRIs or most other medications.

It's like I’ve been in the ocean using floaties for decades, and now all of a sudden the currents are really strong, I don’t know how to swim and I don’t have access to my floaties. It was devastating. I could barely function. I got a job in September 2022 but eventually went off on medical leave after six months.

She wrote to the Braxia team about the extended difficulties she was experiencing – severe vision issues, visual snow, blurred vision, intensified colours, difficulty focusing, difficulty tracking objects, episodes of cognitive dysfunction, severe anxiety / panic attacks, depersonalization and derealization. The clinical care lead expressed their sympathies and hoped she would get a referral for help, but it was hard – doctors either turned Heather down, cancelled appointments, or weren’t much help.

Thankfully, Heather did find some things that helped her: Guanfacine, neuro-rehab, vision therapy, supplements, meditation, and intensive psychotherapy. We asked Heather what symptoms have faded or responded to treatments and which remain an issue two years on.

She says the blurred vision has become less bad, and colours are now more or less back to normal. She also says the feelings of anxiety and derealization have lessened.  However she still experiences some visual distortions and heightened sensitivity to light:
I’ve accepted that some experience of visual snow and floaters will likely be permanent features of how I perceive the world.

She adds: ‘I think it's important to note that I've spent thousands of dollars (if not tens of thousands of dollars) over the last two years to try to reclaim my health.’

In March 2024, Braxia published the results of the trial, showing a promising drop in depression and suicidality among the 18 participants who finished (nine of the 31 dropped out before the trial finished). It made no mention Heather's experience of HPPD. Braxia has since closed.