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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
https://www.facesofhppd.com
https://www.vellichorresearch.com 


Annotation 2019-06-14 200756 (3).png

Faces of HPPD Infographic - LEWIS.pdf

Edited by David S. Kozin
Added image, added additional link.
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This is really incredible. I've been on this forum for close to four years now and have never seen anyone try and tackle HPPD this professionally before. Thank you so much for your dedication to bringing awareness to this condition. 

Have you thought of doing any cross-pollination research with the Visual Snow Syndrome or Depersonalization community? All three of these conditions essentially have the same features (mostly visual snow, anxiety and depersonalization) yet it's strange how there has yet to be a unifying community or even a basic connection between the three online. 

 

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Predisposed to mood disorders is 100%?

Im no scientist but that’s certainly going to play a major bias against those of us who did not have any predisposition to anything except bad luck...

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  • 2 weeks later...

Anyone in the pro psychedelic research space looking for an excuse to blame the patient for getting HPPD. They have funding, access to facilities and scientist trying to usher psychedelics into the clinical setting who have little to no interest in HPPD. This will lend them an excuse to sweep the condition under the rug.

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Hope1, well I'm not someone in that space.  Good God, this disorder needs attention, education, and, above all else, compassion.  The results of the survey show many complexities experienced by individuals and, I would sincerely hope other researchers and physicians can use this information for good.  I have already been contacted by very caring and concerned physicians about the published work -- they intend on furthering research.  I am sorry that you have run up against negativity in  your experience.  I hope to be a positive force.  That's all.  D.

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I have to disagree profoundly on the  "mental disorder" qualification and also ranking HPPD in the field of "addiction disorders"

 Visual Snow Syndrome is not a "mental disorder" also up to this day.

HPPD can be acquired on one single substance intake, means it does not relate specifically to the world of drug "addictions"

The cognition disorder in fact can have a serious and negative effect on individuals, and therefore, create mood and mental disorders as a consequence.

I strongly believe the cause behind HPPD and Visual Snow Syndrome is more of a functional neurological dysfunction to start with.

Still, i'm not scientist, and proof has to be made.

I understand that many good willing psychologists and psychiatrists have to be involved in the research, but i believe precious time and misleading info will spread if we try to solve the problem by only observing the various and very real "mental" consequences. 

I have to agree with K.B.Fante that researchers should in all cases team up with the Visual Snow Syndrome community (some recent studies already are like,  the one conducted currently at the University of Sussex, UK)

 

Edited by olivier24445
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Thank you olivier24445 for your feedback. 

There is a need for all specialty areas to explore HPPD and plenty of elbow room for differing approaches in this space.  HPPD overlaps psychiatry, psychology, neurology... for starters.  One could explore other areas of medicine (genetics, etc.), as well.   Do not leap to judgment that "mental disorder" or "addiction" are inappropriate areas of study... they are IMPORTANT!  It is understood HPPD can occur on one single substance... and that "substance" does not even necessarily need to be illicit. 

There is nothing about the research that is stereotyping "addicts".  Disorders such as HPPD have a rightful place in peer-reviewed journals focused on addiction because that is where a larger population of researchers, clinicians, and patients associated with HPPD can be found who will read the latest news and carry a torch for new studies.  While teaming up with Visual Snow Syndrome communities is a fine thing, it doesn't cover the broader reach of other comorbidities that individuals with HPPD face -- anxiety, suicidality, for example.  These are NOT symptoms expressly as a consequence of being afflicted, but are also possible precursors... we just don't know enough about the relationship to HPPD... yet.  The point I'm making is... HPPD belongs within MANY disiciplines of study, from different angles... addiction is one of those, psychiatry, another, etc.  There is also interest in immune disorders relevance, allergies, etc.  We need to go far, wide, as well as deep.

And I would just like to make a point about decorum on this board.  Human to human (egos aside, titles aside), I am a MOM of a young man who suffers immeasurably with HPPD/visual snow.  I am totally sensitive to the unfortunate treatment of patients who had a drug history.  I have met with many doctors who treated my son poorly, as if he was a "druggie" (He wasn't!)  I get that.  I am WITH you in this fight.   But let me say this... The research I did was unpaid, non-political, genuine, and one would think a forum like this would be welcoming of ANY and ALL research efforts towards finding root causes and effective treatments.  Instead, if you take a look at the many comments I tend to attract (first, when I announced the study several years ago, and now), there is always someone alleging something negative... from bias to misleading information or that I hope to make money on the work/publishing, etc..  Now, THAT... I don't get!  

Indeed, many of you are hurting terribly, you're angry this happened to you.  Doctors are far and few between who understand, who are NOT up-to-date on the facts/research, who even really care.  But when someone comes along and does care, and does work to help, why be so critical?  It is presumptuous and closed-minded to reduce the study of HPPD to one discipline.  I commend all the research being done on Visual Snow, but messages suggesting that any other approach is misleading or wrong is an irresponsible comment. 

In a nutshell, if other researchers and doctors visit this website... WELCOME them and their help. Someday... and I hope soon, there will be relief found. 

D.

 

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Thanks much for your answer,

Still, any good energy is welcome, you're right.

On my point of view, this is how hppd / VS evolves in time , and how it ressemble a lot to Visual snow, and why this similitude should be researched in priority 

- Brutal outburst, Day 0 to year 1 : generates a lot of panic, anxiety and can worsen any pre existant mental condition - For HPPD in fact, versus VS, the difference is the sudden outburst,  more brutal and that can come with trip "flashbacks" - This is the main difference between VS and HPPD.

Most people will recover from that episode spontaneously, and consider it as a mental breakdown, or mild teenage psychosis 

If at that point, it does not go away during the next 6 month

- settling Year +1 to +5 - the symptoms shared by both HPPD and visual snow settle, and start do look identical - how people react to that psychologically may vary a lot depending on individual. I believe many VS patient go into depression and suicidal tendencies too.  This phase is crucial. Any wrong diagnostic or wrong medical orientation at that point can totally compromise phase 3 and literally freeze all chances of recovering a normal social life.

It  might seem very naive, to say so,  but at that point,  all is needed is love, support, understanding, confort and a very very healthy lifestyle. I would not recommend any form of psychiatric medication at all,  or any kind of psychiatric diagnostic.

- acceptance : year 5 to ...99 Once accepted, only the cognition disorder will remain,  and fluctuate,  until the old days. Once the symptoms are fully accepted, most of individuals will have normal lifes and no further need of psychological support. This period, to me, match at 100% to what patients with visual snow experience from day 0 to 99.

in fact i really believe the cure sits in the same place as the one for visual snow, same as Lamictal works on both pathologies in the very exact same way.

Once Visual snow is cured, and there is a lot of attention on it,  these days, we will probably make a lot of progress too.

I'm sorry about my epidermic reaction , I know you have good willing intention , it's also deeply anchored in my own beliefs that psychiatry can provide precious help, but can also focus unproductive attention on the wrong patterns and consequences of this neurological disorder.

 

 

 

Edited by olivier24445
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  • 4 months later...

I took a case all the way through the Social Security system for a client with HPPD (pretty severe, usual visuals with intense derealization and depersonalization). Unfortunately, we lost at the last level of appeal. If anyone has successfully obtained ssd/ssi with a primary diagnosis of HPPD please contact me. Ymmiteegam@hotmail.com that is my personal email that I am the only one with access to. Any responses will be kept strictly confidential. A precedent would be huge.

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18 hours ago, Ymmit said:

I took a case all the way through the Social Security system for a client with HPPD (pretty severe, usual visuals with intense derealization and depersonalization). Unfortunately, we lost at the last level of appeal. If anyone has successfully obtained ssd/ssi with a primary diagnosis of HPPD please contact me. Ymmiteegam@hotmail.com that is my personal email that I am the only one with access to. Any responses will be kept strictly confidential. A precedent would be huge.

It might be better to apply with the anxiety disorder.

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  • 7 months later...

Hi,

I'm so glad this is moving forward and getting so professionalised. I had HPPD for a few years after taking 0.5 tab of MDMA and being put on a ruthless assortment of psychiatric drugs and misdiagnosed with bipolar. I finally gradually stopped all medication and my HPPD stopped. The worst were the novel anti-psychotics. Five years later, I paid the NHS a visit to reassess this completely incorrect diagnosis, and they confirmed that I had never had it, and that I had Complex PTSD, a far more fitting diagnosis. Also, depersonalisation came with my HPPD and is often seen in trauma cases.

I wish you all all the best. I know how alienated, suicidal and terrified I felt when it was at its worst and I hope you all get the treatment or respite of symptoms that you so clearly deserve.

Love,

Lynette

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