Jump to content
Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

Recommended Posts

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.
  • Like 1
  • Upvote 1

Share this post


Link to post

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. 

 

Share this post


Link to post

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...

Share this post


Link to post

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.

Share this post


Link to post

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.

Share this post


Link to post

Give me physician scientist that are willing to draft research proposals and I can get funding.

Share this post


Link to post

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

Share this post


Link to post

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.

 

  • Upvote 1

Share this post


Link to post

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

Share this post


Link to post

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Similar Content

    • By Allen85
      Hello All, My name is Allen. I've browsed this site randomly over the past couple years but was afraid share. I'm in my 30's and have had HPPD 2 for 18 years. I was diagnosed 5 years ago after a seeing countless doctors through the years. Recently I found out my wife was pregnant and I became determined to find a treatment or, god willing, a cure. When I was in my mid teens I took lsd about 5 times and I was a chronic marijuana smoker. The last time I took lsd I smoked weed at the same time and I had the worst experience of my life: My heart began to race uncontrollably, my arms and face became numb; I saw long blury trails on everything and I felt hot and cold all at once. It was so intense that I thought for sure I was going to die. In desperation, I curled up in a ball on my couch, closed my eyes, and began to pray to god repeatedly to make it stop and let me live, until eventually I fell asleep. I woke up the next morning and thanked god I was alive. I swore of lsd forever. Unfortunately that didn't stop me from trying to party with my friends as usual. Every time I smoked weed after that I would have severe panic attacks and almost black out. When I'd drink alcohol I felt like I had a lump in my throat and couldn't breathe. A couple weeks after that horrible trip I woke up to a dull version of the same type of visuals I had the night of my bad trip, I was petrified and began having random panic attacks. I finally told my mother what I did and what happened since and she took me to the doctor. The doctor swore it was depression with anxiety and completely dismissed any lsd involvement. She prescribed me Effexor and xanax. The effexor didn't help at all and it made my heart race. The symptoms were not going away. I was afraid I damaged my brain beyond repair. Shortly after I withdrew from school and became a hermit. The xanax helped a lot with anxiety but the visuals remained. Through the years I saw about a dozen different psychiatrists and none of them knew what was wrong with me and continued me on benzodiazepines and ssri's. I lost my insurance and couldn't afford all the doctor appointments and medicine, so I began getting zoloft and Vicodin off the streets to self medicate. Eventually the visuals became less intense and my panic attacks were less frequent. Although the visuals and anxiety are a part of my daily life, I still manage to function. Some days are worse than others but I forced myself back into society and I got a good job in construction, and married my girlfriend who has been with me through this whole experience. I got off the vicodin with suboxone and continued the zoloft. With the news of our first child, I found a new determination to get rid of this horrible disease for good. I told my doctor that I wanted to try anything we can to make this stop and she agreed to start prescribing me different medications to see what, if anything, will work. She prescribed clonidine last visit and I started it 6 days ago. Unfortunately it hasn't helped my visuals at all and last night I began having strange thoughts and seeing weird images when I closed my eyes. I'll keep everyone updated on how it goes. I'm really hopeful that something will get rid of this for good. Wish me luck and good luck to all of you.
      P.s. I am thankful to whomever started and maintains this site. I hope we can get this horrible disease more attention and find a real treatment for it.
    • By facesofhppd.com
      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 
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.