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?