Hey guys, I posted my survey link on the introductions page some weeks back. I just thought I'd put it out here again. The survey will be online for around 2 weeks longer so wanted to make sure anyone who might be interested gets the chance to participate. The survey will take around 15-20 minutes to complete depending on responses. The survey is investigating individual differences in those experiencing HPPD. The project is supervised by well-established psychedelic researcher, Dr. David Luke. The survey has been ethically approved by University of Greenwich, UK. If you haven't completed it and are interested to participate it would be much appreciated! Thanks, Alex https://greenwichuniversity.eu.qualtrics.com/jfe/form/SV_9tPkqFu2yAaNHOl
June 11, 2019
SUBJ: Faces of HPPD Survey/Research Published – RESULTS!
Dear HPPD Online Community:
As a mom with a grown son with HPPD, I was so fortunate to come across this forum several years ago for information and support. David Kozin, who runs this board, is an amazing man to have created and maintained this website and kept up his work/studies over the years – all the while suffering with HPPD. I would like to thank him for this platform, and well as thank those of you who participated in the survey that I launched four years ago to collect data about individuals who had received an official diagnosis of the disorder.
Fast forward…. Here it is June 2019. Long overdue for the published report, however, I lingered – always hoping to gain a larger sample of subjects.
I am fortunate to have a PhD in psychology, experience in research, and a heart to try to make a difference. Instead of publishing a book, it only made sense to get the results in the hands of the scientists and medical professionals through scientific writing. I am so happy to tell you… the peer-reviewed medical journal, Addictive Disorders & Their Treatment, published by Wolters Kluwer publishers, has reviewed and accepted my manuscript for publication in an upcoming issue. Last week the article completed rounds of publication editing and formatting. The article is posted at their website for advance release.
Lewis, DM, Faces of HPPD: Hallucinogen Persisting Perception Disorder Patient Survey Results and a Descriptive Analysis of Patient Demographics, Medical Background, Drug Use History, Symptoms, and Treatments. Addictive Disorders and their Treatments. Forthcoming 2019.
The link is here: https://journals.lww.com/addictiondisorders/Abstract/publishahead/FACES_OF_HPPD__Hallucinogen_Persisting_Perception.99733.aspx
(NOTE: This direct link will change probably in a month or two when the article is given a print-issue date – right now, it is advance copy, undated. In the future, you can search the article at https://journals.lww.com/addictiondisorders/ .
While the article is available for immediate download, many of you know that publishers charge money for copy downloads (this one is $49), and authors cannot give away their copy. This, I know, is not a good thing for some within the community who do not have the funds.
However (here’s the good news 😉), I contacted the publisher and obtained permission to publish a summary of the results (the important data!) and I created an infographic that provides you all the results. I am including it here as a .pdf file, attached. It’s reader-friendly, and I hope it provides insight.
I want to mention some findings that particularly concern me: the high rate of suicide ideation (among other co-morbid psychological/psychiatric symptoms reported), and the significant number of individuals who reported being unable to work due to HPPD. I feel strongly that HPPD needs recognition as potentially disabling – and I believe there are some individuals who may need government assistance (eg, Social Security Disability benefits). My future work leads me in the direction of carving a path for HPPD as a qualifying mental disorder for eligibility for assistance. I will keep you posted on that.
Again, thank you so very much for those who partook in the survey.
My best wishes to each of you for good health and peace of mind,
Doreen M. Lewis, PhD
Faces of HPPD Infographic - LEWIS.pdf
----- This post is especially important for the Dutch guys out here on the forum -----
Recently I received a mail from Brijder Jeugd (rehab center) where they tell about a new upcoming research by a neurological department from a medical center about visual snow sufferers, and they're looking for people that want to participe in the research. This could be another opportunity to shred some light on the visual snow and HPPD. The research is targeted for Dutch people but I wouldn't hesitate contacting them in English if you're interested in the research. You can reach them by sending an e-mail to the address below:
If you're interested about the medical center, you can visit their website with the link below:
Leiden University Medical Center
Thanks for your time
Note: I'm not related to the LUMC in any way
I am 17 years old and after i went to the music festival electric forest I noticed the symptoms for this were extremely noticeable befor I went there they were there but not as bad at the festival I ate and 8th of mushrooms the first night the second night I ate 2 ten strips and a gram of almost pure lab tested mdma and and then end if the festival I noticed that I was still hallucinating very hard and just had there overpowering sense of something being wroung the people I went with insisted I went to the hospital I spent 5 days there and I went mentally insane talking to myself seeing things fly around my head the hole time they kept me in a completely black room to not stimulate me and that drove me to insanity I have went to different doctors therapist ect and they all agree that in my case it is hppd I am finding it very hard to do basic daily tasks I can not remember something for more than 5-10sec befor I have no idea what I was even thinking about it has completely ruined my life and I don't no what to do it is a challenge to even type this out without auto correct because I can not see my keyboard straight all the letter are moving it is affecting me in every way of my life and I can't handle it
I hope im not crossing any rules of the forum by this post. I think this is a really important matter, so I have let myself risk it and post about it in other sections of the forum too to reach as many people as possible.
Plus people from outside the forum, couldnt access the beyondhppd online section.
Please check out this post.