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 would like to help the community and myself to find some ways to treat HPPD. This forum is great for talking about our problem, but I think its lacking some organizational features that are very important to connect all the dots. Also there is lot of digging to be done to find all the useful informations scattered around the forum topics. I think apart frome the forum we need something extra, something organized. My idea is to build a website with specific functionality. Sort of a HPPD Encyclopedia.
Rough sketch of my idea - the website would have:
Database of users. Each user would have his profile, where he could include information like:
- His story of HPPD (possible causes, duration, przebieg???? etc.)
- What has helped ( name of the drug/supplement/treatment/excercise, how he reacted to it/comment side effects) (X)
- What has harmed him ( name, reaction/comment, side effects) (Y)
- What hasn't affected him ( name, reaction/comment/ side effects) (Z)
- What he plans to try
- Other comments, ideas, experiences.
Database of drugs/supplements/treatments/excercises - this would be a list of all the drugs etc. next to every drug there would be number of positive, neutral and negative votes (how many people it did help, did nothing, harm them).
Users could click on any drug/supplement etc. and see information like:
- Interactions with other drugs
- Side effects (especially the side effects reported by people with HPPD)
- List of all users that it has helped (name of user, reaction/comment) (X)
- List of all users that it has harmed (name of user, reaction/comment) (Y)
- List of all users that didn't notice change (name of user, reaction/comment) (Z)
Now look at the X, Y and Z. Whatever user would input into his profile, that information would be listed also under each drug/supplement etc. This way if few hundred people write out their experiences with different things, we will get a good statistical data on each of them, and will be able to draw some conclusions.
If we want extra functionality, one page could be like a facebook wall - showing the latest activities, but lets focus on the basics ones first.
Graphics design - we want to make it as simplistic and cheap as possible.
I think this is a tool, that would give us good view on the matter and would ensure that no information gets lost.
For example, I found one post on some polish website saying Vinpocetine helped somebody with VS. That was only 1 post I found thorough the internet on vinpocitine and VS. I could report that information on the website and then other people could try it out if they wanted to. Having this kind of website, would save us jumping from post to post on forum or facebook groups and whatnot - all the information we want would be in ONE place. Maybe some pattern will emerge like - people who got HPPD from antibiotics get relief from the drug "x", people who got HPPD from acid are most likely to get help from the supplement "y". On that website we could encourage people to do DNA tests to see patterns in them too and so on..
On the website we could include all the information we have on HPPD, its description, causes, together with any scientific reports - this would be great then to present to doctors, professors, scientists etc. I think its gonna be a great portal for spreading awareness about the condition and its severity. One will be able to actually see how many people are affected by it.
I am not a website coder - I am more of a visioner. I hire people to build websites for me. I would love to be able to do it for the community but at the moment however, i have no cash - I am after being very unlucky (or stupid) with my investments.
If there were people interested in creating such a website we could share the ideas of what functionalities we want on the website to be.
There are some ways to go about it:
- If there is any webdesigner in this community, that would be willing to do the website for us - that would be great.
- We could make a fundraise and then decide whos gonna do the website.
I am willing to spend my time on supervising the construction and improvement of the website.
I don't know yet how much could it cost.
Yesterday I talked with a friend of mine, he said this kind of website could take him anything from 30 hours to do. He made a note, that if we get somebody from internet to do it its probably gonna take more. I don't know how much he charges yet and if he is gonna have time to do it ( he will let me know soon) - however im living with this guy right now, he is a cousin of my best friend, which means - he would not rip me off for one cent - which I believe happens in this industry a lot. If we get somebody to do it remotely, there is no way of veryfing how much time he actually spent on the website etc. This friend of mine is programming and building websites all his life, working in a corporation etc. basically he knows what he is doing. He could commit 4 hours every weekend to build this website, which would mean it could be finished in let say 2 months.
This is not by any means a way to try to make money - anybody interested will be able to view commits (new code added) and verify the work.
My rough estimate is that the website could cost around 750 euro, but lets wait and see what the guy will say. However from my experience its good to assume its gonna be little bit more expensive.
On the website we could post some adds and the money from it could go to the website development or any future HPPD researches - or we could have no advertisement, thats up to the community. I believe however that we do need some cash.
Please let me know of your thoughts - all comments are valuable.
my contact firstname.lastname@example.org , facebook: Pablo Esscobar from Rio De Janeiro
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.