Studies, Guides, Specialists: HPPD Updates
An overview of what's new with the Perception Restoration Foundation
The Perception Restoration Foundation (PRF) is a nonprofit launched publicly last year to raise awareness and funds for studies into Hallucinogen Persisting Perception Disorder (HPPD): a little-understood neuropsychological condition in which people experience sustained, distressing changes to their visual perception (and wider experience) after taking psychedelics (and other drug classes, but especially and uniquely psychedelics, it seems).
HPPD may affect as many as 1 in 25 lifetime users, yet understanding, awareness and research are lacking - all when adult use is increasing, public access is widening, and therapies look set to develop and scale to clinical populations that may be more vulnerable to HPPD. Its effects can be triggered by single or handfuls of experiences, and we don’t know much about its risk factors, best treatments, how it works, or how far the HPPD diagnosis can go in capturing the changes people experience to their minds.
For more detail on HPPD, we recommend checking out our in-depth HPPD Information Guide, or our introductory evergreen post on the Newsletter. We would invite readers to inspect, interrogate, and offer comments on the Guide via info@perception.foundation to ensure it's as up-to-date and accurate as possible.
The PRF has made some progress, and wanted to share some of our updates:
Our Neuroimaging Study - the most advanced ever with HPPD patients - with Macquarie University in Australia is processing its first test subject in the next week. Using MEG, EEG and fMRI, researchers hope to surface some neurophysiological signature or mechanism to HPPD, which may lay the conceptual groundwork for better and more targeted treatments.
HPPD patients are typically prescribed (with some success) repurposed psychiatric drugs like Lamotrigine, Keppra and Klonopin, around which the evidence base is consigned to case reports. There have been no controlled trials, and side effects and efficacy can be hard-to-predict.
Our Macquarie questionnaire study of HPPD patients has tied up and has moved to the next phase of data analysis.
Our project with EHave and Drs. Olivia Carter and Jacob Paul at the University of Melbourne on epigenetic transmission for HPPD, i.e. whether the condition is heritable (and whether a genetic test could be designed to see if any trippers are vulnerable), has passed its ethics review, and researchers aim to start the first phase of testing in the next few weeks.
Melbourne researchers are also hard-at-work in developing their visual processing tool, which we hope to make a freely-accessible open tool for people to gauge their risk of developing lingering perceptual changes and HPPD.
We are funding one of our employees, Ed Prideaux - a writer and journalist who recently covered HPPD and his own experience in an article for a critical mental health magazine - to do MSc Psychology research into HPPD at the University of East London, where he aims to investigate the overlaps of HPPD with Visual Snow Syndrome (VSS), and the condition's intersection with anxiety, dissociation, and other non-perceptual complaints.
Ed has also appeared on a number of major psychedelic podcasts, and the conversation around HPPD seems to be changing in psychedelic circles.
We have begun work on a Specialists Directory, which lists HPPD-informed psychiatrists, neuro-opthalmologists, therapists, counselors, and anyone and everyone who could help to lessen the distess of HPPD. If you have had a successful encounter with a specialist that is not yet listed, please let us know at info@perception.foundation and we will contact them for a follow up.
