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 wanted to share some information that may help visual snow sufferers. My son (who has lived with HPPD for 5 years now) had standard blood lab work done which revealed he had a low count for testosterone. This, of course, has various medical implications and treating it is important. He was placed on a bi-weekly treatment of intravenous testosterone to increase the count.
An unexpected outcome was discovered.... within hours of getting the testosterone, his visual snow cleared to a significant degree. It lasted for weeks.
There is currently no research on testosterone and its effect on visual snow. Not sure if what happened to Kevin is an anomalie, or there is something here worthy of further study. Just thinking it might be worthwhile for others to check their blood levels and, if low, ask the doctor for supplementation and see if visual snow symptoms improve.
Hope this information helps someone!
Doreen Lewis, PhD
By Loukas iliop
So, i have been on research lately and somehow came across homeopathy. I was researching about my dpdr and found that there is a homeopathic remedy called Anhalonium lewinii. Anhalonium lewini is a psychedelic plant(has mescaline). As far as im concerned, in homeopathy they treat x with x so it might makes some sense. The reason im writing this here and not on some dpdr forum is because i believe it can help hppd as well. Microdosing this homeopathic remedy helped people get rid of their dpdr. Thats what i read: Anhalonium lewinii is an excellent remedy for brainfag and hallucinations. Patient seems to be in a form of intoxication accompanied by wonderful visions, remarkably beautiful with varied kaleidoscopic changes. These patients lack conception of time, are dissatisfied, suspicious, insecure, forsaken, resentful to society, dissociated from environment and lack self confidence when in company. They self analyze themselves, escape in a world of dreams and feel they are different. These patients can have a confusion of identity, as if had two wills, or are separated from their thoughts, may also have a delusion of floating in the air, of being double, being separated from the physical world and are observing from above.
A lot of people disagree with homeopathy but this sounds interesting. What are your views on it?
By Loukas iliop
Hi guys. Im apparently new to the forum, so i want to start by explaining my story and how and why i got here. Im 16 years old and as you can imagine, people between that age aren't very concerned about their health or anything in general. Even though i was a kid who liked exercising or working out i was also very curious on trying drugs like weed . About a year ago, my mom got cancer but i couldn't feel anything, like i had no fear that she was going to die(i hadnt tried any drug in my life, not even tobacco or alcohol), feeling like im some kind of numb, not having empathy (which scared me because i was that kid who would be concerned about anything related to his family.) A couple months later, i started feeling more lost. I had lost the days and i didnt care at all . I was depressed but i didnt want to realize it. I couldn't accept the fact that something was wrong about my mental health at that point. After my vacation between December and January, i came back, again kinda numb. School was closed for Christmas and would open soon. As school opened, my friend asked me if i want to smoke some weed with his friends. Not even thinking about it, i answered, why not? The next couple of weeks i would smoke about 2-3 bong hits a week(nothing more). And yet i wasnt feeling high(maybe because of the dosage) . So one day i made a stupid desicion to get as high as possible(at that point i hadnt get a single high feeling in my life, not even from the bong hits). I started smoking and taking bong hits. I ate nothing. Fifteen minutes later i was kinda confused. I would be so stupid that i couldn't even think of simple things. I started to realize that i was high and it felt cool, for the first minutes. 2 minutes later i started feeling like i was in a boat, like i was lost and dizzy. Suddenly, my vision started to have some wierd black dots everywhere . I had a blackout and a bad panic attack . The high was so strong that i couldn't control or see anything for a couple of seconds(idk if that sounds a bit unrealistic but im trying to explain everything as it went through). After that seconds, i took control over my body, but it was like i was in a lucid dream. Like i was a camera, like i was observing the world through the tiniest tv screen . I felt my body strange. I would touch things and feel them after 2 to 3 seconds . I was so confused and anxious . My friends had freaked out because nothing similar didnt happen to them ever .i lost my mind, i got paranoid that this thing would last forever, like i was going to live the rest of my life like this. 2 hours later i wasn't high no more, but something felt strange. I went to sleep and i remember being between sleep and awake. I was so lost that night. I was having a dream of getting paranoid while i was also partly awake. The morning came and yet i was lost. I had black dots around my visual field, I couldn't see the walls clearly, like if they had some light everywhere in them. Moving my eyes from a shiny direction to another, i would see the previous image blurry for a couple of seconds. All that combined scared the shit out of me making me more paranoid about everything. I started feel like i was fake, everything seemed like a dream, my body felt like it wasnt mine. I got home after school and i remember having a nap caude i was to tired. Again, i couldn't sleep, i was somewhere between sleep and awake, lost. I woke up feeling like i was a stranger to everything. I had delay on touching things like when i was high. Im not gonna lie, i thought i was in a dream again. That night i explained my parents everything and they were very helpful. The next days my symptoms got worse. My anxiety increased and i had some terrible panic attacks. I would see those black dots everywhere ( when i would wake up in the morning they were moving fast as hell), and a little tinnitus. After a couple of days i would have that delay over the things i touch for some minutes and that was kinda annoying and unexplainable to me . I started observing around and seeing some small halos around people. The first couple of months was literally HELL. Suicide was the only option, i would tell to myself. Everyday i was overanalyzing everything. My walk, the way i talk, how am i able to see humans everyday without observing everything they do and all that insane stuff. It became i habit. Every single day 24/7 checking in to see whats wrong , if im going to be like this for the rest of my life. I went to therapists but they didnt help. They wouldn't diagnose anything. I had an mri and still nothing. I was feeling so unaware of everything. Being in autopilot. I also started homeopathy but it didnt help. My visual symptoms stayed the same 24/7 . The only time the were worse , it was when i was waking up(stayed for 10-15 minutes and then back to normal). 2 months got by without me doing nothing except of overanalyzing every single detail of me, my movements everything.it was that time that i couldn't take it anymore. I started running once a week . It did help with my anxiety (not my visual symptoms though. They were the same all the time.) I also started to taking cold showers. Amazing . Simply amazing for my mental state. It was so difficult at first but i tried and trying my best not to care about jt . I would gonto school and starting to get mote sociable,although feeling lost cause of my vision, but i tried not to care at all(it helped). Now im 4 months after that terrible experience and im way better with the dpdr thing. The only thing that remains is the visual symptoms and the feeling that im in a moving boat. They scare me sometimes causing me panic attacks. I hope that time will heal me and all that people that feeling hopeless. Remember guys, you are not hopeless. You will never be. I was hopeless for months and i did nothing. I AM BETTER. even though my vs and all that hppd symptoms are still there im in a way better mental state than i was. If someone is feeling hopeless or wants to talk, feel free to hit my dm anytime. That was my story . Hope u people found ot helpful. It surely release some kind of a tension to me! Stay safe