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
I have had HPPD for 15 years,
I am much better now than when it started, I have tried so many natural and psychological techniques that I feel its the right time to test if certain Medical treatment could work.
My main symptoms are now anxiety, depression, heavy brainfog, visual snow, problems reading - writing, focusing and depersonalisation sometimes.
I have found a neurologist in the city of Barcelona where I live, and I will like to ask you guys for a favour before I meet him:
is there is an order for which meds are to be tried first?
which meds in your view have been the most successful in treating some symptoms?.is there a page with these things online?
I tried a low dose of diazepam and the day after my symptoms where very high again so I stopped, same thing with an antidepressant.
Having said all of this I will like to share some hopeful news too: I have been fortunate to have had days with almost no symptoms, have traveled extensively, managed to finish my BA in fine arts, lived in various countries, got my drivers license, can now read (even though i get confused sometimes), I can hold conversations much better (less DP), at the beginning of this disorder my life was very very miserable now its a lot better.
Thank you for reading.
This is interesting....
Was browsing some medical things today and came across this med that came out recently. It made me think it may be beneficial to this underserved area due to its unique mechanism of action.
It's essentially an add on antipsychotic BUT it doesn't work like any other antipsychotic on the market. It targets 5HT2A almost exclusively as an inverse agonist and to a much lower extent at 5HT2C. You guys probably know that LSD, psychedelics, ect, target 5HT2A as an agonist, this is essentially a down regulator at that site in other words calming overexcitability. That's kind of simplifying it but it look interesting and nothing else seems to help much other than time. The side effect profile is suppose to be low because it does not effect dopamine receptors that cause Parkinsonism, Tardive dyskinesia. Its used to treat hallucinations in Parkinson's because it doesn't mess with dopamine.
I know there's some people on this board that know about all the pharmacology and this looks like it's hitting where it needs to, and a new avenue, there is no other inverse agonist on the 5HTA2 receptor on the market, might be worth a shot, best of luck to all of you, give it a look.
^^^^^ bullet points sum up above link ^^^^^
I've had what i believe to be HPPD for about 3 years now, after a slew of mushroom trips around age 15. I cant pinpoint exactly when i started showing symptoms because i feel they came on very subtly and gradually, and after 3 long years, seem to still be worsening. I remember the first thing i noticed was a light visual snow or static fuzziness that i could only see at night or in dark places, then slowly it started becoming more noticeable with time. I would start then seeing the visual snow or static fuzziness during the day time, most noticeably when looking at something solid and with minimal detail, like a wall or a cloudless sky. The trend of it getting worse continued, i would start getting progressively stronger tracer vision, beginning with things like car and street lights at night. As before, over a few months these symptoms began to translate over to during the day time. Now its to the point where i get tracers as simply as slowly running my hand past my eyes, and the visual snow is strong like what you see on a television that isn't getting any signal. The visual snow even forms into psychedelic shapes sometimes, spirals and things that look like your phone screen when there is grease on it. This is most often at night and in the morning when i am tired, but is not limited to that. When i close my eyes all i can see are these weird colorful randomly moving shapes and images. If i do something like read a book or read something on my computer, when i close my eyes i just see randomly occurring letters and numbers, and this lasts for 15 minutes or so. Florescent lights make all the symptoms particularly strong, so you can imagine school was quite difficult.There are halos around almost everything i look at, especially letters and numbers. My memory and ability to think straight and clearly feels like its degenerating. I cant focus on anything, and having ADHD doesn't help aha. I've also dealt with things anxiety and depression and depersonalization and severe migraines so that cant be helping. Ive completely stopped all substances except alcohol, the occasional cigarette and the occasional joint to help deal with the stress. But i used all 3 of these things and more up until about a year ago. none of it was hallucinogenic though
My point of posting this was not to for attention or plead my case on how hard it is to live with. I know there are people on here that have it worse than i do, but i rather just posted this to see if anybody can relate to my experience so far and has dealt with a similar situation. I haven't read many stories of people with HPPD that seems to be progressively getting worse, so i'm just seeing if someone can confirm its HPPD and not something else. I've been to countless doctors across Toronto and most of them have even heard of HPPD, let alone how to treat it haha, so i kind of gave up on the medical route. Ive had brain scans that all came back negative for anything so HPPD seems to be the only thing i have found that matches my symptoms. Its a scary thought thinking about what it might amount to if the symptoms keep exaggerating like they are doing now. Its only been three years so its pretty debilitating thinking about what it might be like after 10...20...years etc if it doesnt stop, as i only just turned 18 aha. This is my first post so any replies or support really helps, thanks. -Cal