By Jacob Lesley
I was thinking there is a Visual Snow Initiative for finding the cure! Why don’t we start our own fund to find the cure? Think about it personally I am willing to put $1000+ into it maybe more if needed because this disorder is a huge burden..
if we have 18000+ members or more willing to donate for their own cure we could help ourselves.. why don’t we give it a shot I mean! What do we have to lose?
My expectation is that their is going to be a cure within 10-20 years either way but we could speed up the process by starting our own initiative to find a cure for this disorder! And personally I think there is a cure I am almost sure! We just haven’t find it yet. But we need money for research!
Hey guys, I posted my survey link on the introductions page some weeks back. I just thought I'd put it out here again. The survey will be online for around 2 weeks longer so wanted to make sure anyone who might be interested gets the chance to participate. The survey will take around 15-20 minutes to complete depending on responses. The survey is investigating individual differences in those experiencing HPPD. The project is supervised by well-established psychedelic researcher, Dr. David Luke. The survey has been ethically approved by University of Greenwich, UK. If you haven't completed it and are interested to participate it would be much appreciated! Thanks, Alex https://greenwichuniversity.eu.qualtrics.com/jfe/form/SV_9tPkqFu2yAaNHOl
By Zara ibn Derra
I will try to tell my story as authentically as possible - but what I can say is that I am cured (in a sense)! And I am writing today because I would have liked to read more positive stories when I was at my worst:) I am joining the community to share my experience and give support when possible.
Drugs before HPPD –
I had my first joint when I was 14. And I smoked a lot since then. Between 15 and 17 - I smoked almost every day. I graduated from high school when I was 17 and moved to another city.
There, I tried Mdma and cocaine (I had just turned 18) - I really liked molly. I took some in considerable quantities! I think that on this first year, I had more than a hundred experiences with crazy dosages (I took more than a gram + 2x once). I lost weight and became rather depressed – low serotonin level and I continued to smoke every day which ofc did not help.
LSD and HPPD/Depersonalisation/Derealisation –
At the end of my first year, I went to Berlin for the holidays. I tried acid for the first time. Great experience! Really incredible with really nice sensations. It helped me a lot, and I was able to open my eyes to a lot of things, including my exaggerated consumption of Mdma.
Coming back from Berlin, I spent a few weeks where I felt really good, complete. But I was already starting to notice that my vision was not really the same, especially when I smoked pot. More I gave it attention and more it became overwhelming. I was able to manage it till the day I had an intense panic attack. Afer that, I started having a lot of derealization and depersonalization episoded. I no longer recognized myself when I looked in the mirror and felt like I was stuck in a dream.
So here I am, 19 years old and completely fucked up. And a vicious circle is set up : Anxiety-HPPD-depersonalisation-derealisation. I still managed to get used to it and to maintain social relationships (at that point, I am depressed and I feel miserable - I was sure that this will last forever). I'm keeping doing Mdma (it was a sort of consolation I think), which did not help - the comedowns were particularly horrible and sometimes I felt like I'm looking at life through a window, that I am trapped in a body which is not mine and that everything is just an illusion for days on end. I do not suffer from insomnia, but I sleep and wake up with exactly the same feeling of derealization and depersonalization.
In fact, I have never told anyone about it. I tried at the beginning (the first days my HPPD appeared) to share it with one of my close friends but since he didn't seem to really measure my distress, I quickly understood that I was in this alone... I did not know this forum at the time.
Getting used to my HPPD, then a difficult LSD experience –
Well... So, 2 years went by like that. I still have the same issues, but I am quite used to them. I still take some ecstasy, but I manage it better. I even tested mushrooms and a low dose of LSD which did not really make my visuals worse. My anxiety is mostly social at this point - it feeds off my HPPD.
At 22, I decided to take acid again with friends. I do not really decide - I let myself get carried away by something weird, probably stupidity:). Anyway, I took some more. The dose was pretty high (less than what I tested in Berlin but still serious). The trip went well but the comedown was horrible for me. I will pass you the details because this is not a trip report but what you need to know is that all my friends were down (after 12 hours tripping balls) but I was still really high. People were starting to sleep, and I felt like I was stuck in the trip with mid-hallucinations still happening at this point. It would not go away. I could not sleep while every single person was able to. I was stuck!
So here I am – I am going through the worst anxiety of my life. I am questioning my sanity – I just want to go to the hospital, to be fixed. 24 hours later the trip, I am still hallucinating (distortions amplified by anxiety). Somehow, I managed to sleep – I think my brain and body could not take it anymore.
I wake up 8hours later. I give a shout of joy! I am not hallucinating anymore; I am back! However, my HPPD is really strong now with serious derealization episodes and anxiety attacks the following weeks.
Philosophy and playing with HPPD –
After that trip, I decided to take a maximum interest in how to control my states, my thoughts - I discovered stoicism and meditation in the months after the trip. And all the philosophies that are focused on self-control, ego, purpose, nihilism, existentialism etc. Actually, I became interested in all the wise people who were willing to teach me how to live. I applied the theories I read and I started "playing" with my HPPD and my anxieties – I observed them, let them dominate me, try to dominate them sometimes. In fact, they had become my companions. And my view of them had changed. Instead of thinking that my HPPD was something terrible, I thought of it more as the memory of a life-changing experience... and as I changed my view of it, the suffering was gone!
HPPD could be triggered by some situations sometimes but I was now able to ignore it... In fact, the one lesson I learned regarding this condition is: Decide to ignore your HPPD and it will no longer be a source of anxiety and despair.
My life now –
Today, I am 25 years old - I have a very good situation with a job that requires a lot of concentration and I can manage without any problems [When I was at my worst, I couldn't look at a screen or read a book for more than 10 seconds without everything starting to breathe/move quite heavily]. I started sport and I lead a rather positive life. In any case, my HPPD is no longer central in my life. I am cured.
My anxiety still exists but it is not fed by HPPD, it has deeper origins. In fact, and strangely enough, this HPPD experience helps me to calm my anxiety because knowing that I have been able to overcome it (and the derealization and depersonalization it has caused) really gives me confidence in my strength! As Nietzche said: what does not kill me makes me stronger! And that is exactly what happened. With my curiosity and the help of a few wisemen, I got out of an incredibly negative loop.
I still enjoy techno parties and take ecstasy sometimes with 0 problem. However, weed still makes me anxious... Except some rare moments when I am really relaxed (and alone). Also, I am now having some thoughts on taking shrooms... I don't know if I am gonna do it! I will let you know:) It will probably be really light doses.
I wanted to say that my HPPD has not totally disappeared, it is my relationship to it that has changed! I can do whatever I want with it – it is my superpower in a way. When I am sitting in a bar for example, waiting for someone, I can make the letters on my phone breathe and it's fun, whereas 5 years ago it was overwhelmingly confusing, and I had no control of it.
This is my personal story – I wanted to share it to say that it is possible to get out of this! Good luck to all of you and if you suffer, please let me tell you this: If you can't change this thing that's happening to you, change the way you look at it.
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