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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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  1. 3 points
    I drank for a number of years after I quit dosing. I wasn't out of control, but I was definitely drinking too much. I went in for a physical, and had a blood test. A few days later my doctor asked me to come in. She wanted to how much I was drinking. I was honest with her, after that conversation I quit for good. To be honest I was self medicating to deal with the anxiety caused by this disorder. Some people can manage their alcohol intake. Others, like me, can't. I had to find another way to manage my anxiety. With a young family, and a new career, I had too much to live for. I don't think having a few drinks is a terrible thing for those of us with hppd. Just my opinion. For me though, I think it would have made me a sick and unhappy soul.
  2. 2 points
    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 Faces of HPPD Infographic - LEWIS.pdf
  3. 2 points
    RE: Depression and Ketamine Infusion Therapy - WARNING! I wanted to share IMPORTANT information about a trendy treatment for severe depression/suicidality. That is, the use of ketamine IV therapy. It's expensive and there are news reports that it is a miracle for serious depression ( there's alot of stuff on youtube.com). My son had two rounds of Ketamine Infusion Therapy, and it seemed to work - we were (initially) quite impressed with the effects. Then I found a case report written by Dr. Abraham last year that shows the ketamine IV therapy CAUSED HPPD in an individual! If it causes HPPD, then it might exacerbate the HPPD, too. Please see the article... I am providing the online link, below, and attaching a PDF copy here. Salzman, Carl & David Abraham, Henry. (2017). Hallucinogen Persisting Perception Disorder Following Therapeutic Ketamine: A Case Report. Journal of Alcoholism & Drug Dependence. 05. 10.4172/2329-6488.1000281. Link: https://www.omicsonline.org/open-access/hallucinogen-persisting-perception-disorder-following-therapeutic-ketamine-a-case-report-2329-6488-1000281-93968.html PDF copy attached. Hope this information helps! Doreen Lewis, PhD hallucinogen-persisting-perception-disorder-following-therapeuticketamine-a-case-report-2329-6488-1000281 (3).pdf
  4. 2 points
    I don't have visual snow, never have. I have visuals to beat the band, but no snow. Categories, taxonomies, labels, etc. never quite fit in the real world. I think hppd a spectrum disorder as varied as the people who have it.
  5. 2 points
    I tried homeopathy and definitely felt something, although it could have just been placebo. If you think it could help and won't make your HPPD worse and are willing to take the chance then you should give it a shot. The homeopathic medicine I took was cannibis infused and I didn't experience any averse side effects. I don't think there's much risk but I also don't think you're gonna "cure" yourself. HPPD isn't really something that can be instantly reversed.
  6. 1 point
    Stress and lack of sleep can do this. Just try to stay calm and remember that is has gone away before and will almost certainly go away again.
  7. 1 point
    It definitely exacerbates hppd,,, I can confirm that one personally! On the flipside, I have seen a friend of mine, who was severally depressed get cured by ketamine... There is certainly something to it. What is required is serious warnings by these doctors before taking on each patient. Adding hppd, dpdr and anxiety to an already depressed person will results in many suicides. Sadly, the cash grab is gonna lead to a lot of misinformation and future problems.
  8. 1 point
    Yes. the researcher is stating their desire to advance research into these drugs. However, a biased researcher wanting glowing reports about people tripping then having great lives would NOT advertise their survey on this web site. Hey Hope1, I was just putting up the results of the new HPPD survey while reading your post, and a Master's degree thesis is a recent graduate with a Bachelor's and I have a soft spot for this group. The researcher could just as easily be a person with HPPD, and asking this question: There question the researcher is asking: More specifically I am conducting research to understand the long term effects of psychedelic drugs by exploring whether there are differences between the perceived well-being, life satisfaction and mood of psychedelic drugs users and non-psychedelic drug users. So, the experiment: Is there a significant different between the perceived well-being, life satisfaction and mood between people who take psychedelics differ than non-psychedelic drug users. So, Hope1, you are a psychedelic drug user. You would probably answer very negatively on all of these areas. You would probably be way down at the bottom. But, by including HPPD individuals in the test, it allows for a representative sample to be included that (on face value) would have negative results (generally). Generally, assuming the basic premise is as stated, research design would ask if a person has HPPD or ask questions that would inform that a person does, and use item response theory techniques to look to see if answers are highly predictable based on association with HPPD (i.e. participants that marked that they received an HPPD diagnosis could predict a person's overall score more than any other question). This should not invalidate the responses, but this becomes part of the discussion and also advanced statistical techniques can help control for this. I have not checked up on this student and their adviser, but I think it is good science to develop a protocol to include advertising the survey on sites where people have a majority of likely negative responses while probably advertising on sites like Erowid or others that would skew towards the positive. But, for feel good news: I agreed to put my name on research with a conclusion that MDMA did not show significant negative side effects for a large battery of neurocognitive tests because I thought the design with the control groups was smart, I created the database of responses for import into the statistical software (lots of numbers), spent some of my best hours sitting next to one of the top 10 psychiatric researchers of the century discussing the results and statistical methods to investigate the responses and worked on part of the manuscript related to my work. It doesn't look good on my HPPD resume, but I dare someone in the pro-psychedelic community or any research community to claim I am biased against psychedelics/enactogens, and when I do talk about the negatives and HPPD then my opinion is easier to digest without judging me as biased against psychedelics. So, I hope when I ask for research participants with the visual snow group that I don't receive a strong backlash against research because some very vocal visual snow folk have fought with me over VS having nothing to do with HPPD. The rationale was because HPPD is defined by requiring a hallucinogen, so I argued that the definition is made by humans and I know them and I know how the DSM is made and it could very well be called Altered Perception Disorder, Hallucinogen onset vs APD, not otherwise specified. However, it was an emotional argument, so I left. The point that the DSM diagnosis are often not based on a biological reality or a proven etiology, and at the time they were biased so that when 1 psychiatrists sees a patient and diagnose them with HPPD then 9 others would make the same diagnosis independently. The phrase, to cast a wide net, would apply to the methods for creating a diagnosis. The content validity of this diagnosis was sacrificed so that the diagnosis would be reliably reproducible. In many other diagnostic entities this was fixed, but until the last few years HPPD has been the ugly duckling forget about them group. Dr. Abraham is retired. He was the one sending in tons of information to prove otherwise. This is why I am so excited that my plans and a few other researchers are coming together at the right time. I am sure you saw it, and I have this feeling (ok, I was watching the server processes queue and it looked more like a certainty) that anyone that listed a desire to be notified about research or perhaps (be notified about anything at all on this site) received an email about the Faces of HPPD research that is both published in an academic journal and Dr. Lewis's wisely had the graphics of the main conclusions available for the community without having to violate copyright. So, if you missed that, check out:
  9. 1 point
    Of course, I am not happy with reckless research. Jay and others then usual me after they did, with questions and verification of the research methods, and I look who is doing it and I usually know if there is or is not good science coming from the lab. I have yet to check this, and I am here because I was speaking with a reseacher about HPPD and some unique factors that may shed see insight into this area. So, I opened this thread up. I am not going to police behavior, but in the medical and research community the fanatics are the first not to be taken seriously. Tim Leary did little to help their cause. In 2004ish, A prominent German researcher said to me, "I have read countless years of research with LSD, and have yet to find one case about HPPD. He had good reasons in his mind to think I was full of shit. HPPD is not dose dependent and it isn't always on the first time, but maybe the 64th time. Millions of people have taken LSD, so why have I not heard of it. " He did do a tremendous amount of research. He was not acting in bad faith. I told him, honestly, I can't explain these things and it bothers me also. I can't say with 100% certainty that I didn't get infected by a parasite that day. But, what I can say, is I have over 1000 people who come from backgrounds in the military, legal, medical, students, caretakers, teenagers, teachers, members of our government and more that I have spoken with and we all share the same symptoms and all attribute it to the same type of event and we all react paradoxically to drugs like Risperdal. I can tell a person on the phone to not tell me about their symptoms, but I will tell them what they see before they say a word, and I have for some of you. So, all I can say to this researcher is open your mind at least to it being real and one major causal agent is hallucinogens like LSD. His email said, I can't argue with a level headed response like that. You are willing to question it yourself, but statistically and in your experience it would ridiculous to think otherwise. I believe you. A few years later a case report and discussion comes out and a first case of HPPD published with a new psychadelic and he is the first name. Another researcher, very intelligent and one of the most influential in psychadelic research was embarrassed when they saw my bibliography of studies. But, I didn't get an audience with them because I told him he was doing the wrong thing, because I was not one of the people that asked to get treated. I am giving HPPD people the most grief because our actions are what helps control our boat. I made a few bad decisions, and because of my influence it affected us all. When I am sending out applications and talking with researchers, the Lab I work in might just be doing pro-psychadelic work because our areas and needs might be very closely aligned. Until proven otherwise, nobody is an enemy. Potential allies. Jay is 100% correct. The largest study to characterize HPPD so far, which was published in a Drug & Alcohol Research Journal. The authors include Earth & Fire Erowid, two people that provided me excellent advice and also a very comprehensive review of HPPD. Also, some of my biggest allies that have spoken out and discuss with my cases of HPPD include leaders in their field of psychedelic research. Honestly, if I had to take the statistical odds and I was not a person with HPPD but I did have PTSD from combat, when the choice is between taking an SSRI and maybe an antipsychotic for my life (perhaps develop tremor) or take two pills of MDMA with certified therapists with use of these substances, then I would choose the MDMA. MDMA has been a tremendous tool for PTSD, BUT I would also want as a patient to have an informed consent form and a researcher that can talk to me about the realistic risks of HPPD. Perhaps, they ask if I took mushrooms: would you agree that you can take much less mushrooms and trip just as hard as your friends? I know this was my case, and perhaps it is 70% of the cases. Then, this would be a disqualifying item for participating in research. Psychedelics help cluster head suffers. This is literally the only pain so severe that a person without any psychopathology have killed themselves just to end the pain They come in clusters, injections of Heroin would not help. They are nickbamed uicide headaches and I have witnessed them and I would probably ripy eyes out before going through them all my life. But, somebers started finding that mushrooms aborted an entire yearly cycle more. As a community, we have been prejudged as malingers, people faking a disorder or just people with normal symptoms but we are just paying to much attention to them. Where have I gotten the biggest pushback? Anti-drug people. I have received calls from people at a conference after they spoke to a NIDA representative who called HPPD most like malingers. My earliest allies, where the people who were on the front lines. It does suck when research is not going your way with funding. Look at Visual Snow Initiative. They have put a few 100,000 in research labs hands and the executive director/founder is a development and messaging genius. Hey, but like Greg and I would do back in 2002: a drunken post comes out and swears I am stealing money or because I had a section on the website for current drug users worth HPPD to write messages because it is triggering to average users, then I was enabling and swearing. Then, I fight back. Next day, all is good and usually apology about writing messages at 4 AM when in a bad mood. Hug a psychadelic researcher, because they just may be the person that secures you funding because the argument they should help with funding because nderstanding HPPD will prevent a possible catastrophic participant experience that could threatren all of their research future may just be on someone's mind. I am still out and personal medical issues outside of HPPD. I stopped making promises until I do something new. David, Actual
  10. 1 point
    Hope1, please calm down. Attacking people who are interested in this field, but not your very specific field is pointless and will just push people further away. It is worth noting that well being can be negatively affected as well as positively. Having long term negative impacts on well being will, i'm sure, be interesting to people making this survey.
  11. 1 point
    Hi everyone, For around 13 years I have had very mild HPPD symptoms which have not affected my life in the slightest. I have had a few 'episodes' where things have flared up but all in all I can't say I have been seriously affected by the condition. Recently however I went through a series of very stressful events, and my symptoms have gone from being completely unnoticeable (honestly, I didn't even think about them for at least 4/5 years), to me being in absolute hell every day. Severe VS over everything/trails/light sensitivity/afterimages/DP/DR. I'm really struggling to function - I do not have a moment's respite and every day is an absolute battle. I can barely work and any sort of relaxation is impossible. Not sleeping well at all. I cannot believe I have ended up in this state after having zero symptoms for years and years. So I guess I'm looking for advice. I need some hope that things will settle down but I just feel absolutely trapped in this vicious cycle of stress > vision > DP/DR > stress > vision... Has anyone else experienced severe flare ups of a similar nature? Any advice?
  12. 1 point
    Yes, i check that too, but in the end, after that hellish triggering phase ( last not more than a few months ), the condition is totally similar as VS it seems. Also, i believe Visual Snowers who wake up with this shit suddenly must go into the same psychic trauma, horrible anxiety, depersonalisation , depression phase. Once it's all gone , what's left is just the same syndrome.
  13. 1 point
    In fact, you might want to check doctor Abraham following interview on this Visual Snow channel : https://youtu.be/a5Ghxo1jdQM
  14. 1 point
    I think taking drugs like LSD changes everyone to some extent. It's a powerful experience where you can look into your own mind, not something that happens every day. I'm an awkward human too, but I was born that way. Don't beat yourself up for being a little out of step. Some of the most successful people I know come from the awkward ranks. My suggestion is the same in most of my posts, lay off drugs, at least for a while. You're young and it's likely you'll bounce back. If you continue getting high, who knows. Just my opinion, you understand. Also (more advice from an old guy), don't dwell too much on "the rest of your life". Focus on making progress now. Never give up on yourself, just because you're altered from drugs doesn't mean your not a worthy person. Take care of yourself, stay clean, keep focused, and chances are good that you'll be doing ok after a while. Also, be patient. Hang in there and take care.
  15. 1 point
    For me, alcohol doesn't seem to have a negative effect on my visuals, it even seems to reduce visual snow by just a little temporary It is the additional use of cigarettes that temporary (1 - 2 days) gives a notable increase in the intensity of visual snow and causes closed-eye light flashes
  16. 1 point
    Hey All! It's almost been two years now with HPPD, coming up on June 2nd. Man, it's been a hell of a fucking ride. I don't know where to start, I've grown so much since getting it when I was 16, I'm 18 now. I'm graduating from high school in 15 days. This site has been in my life less-so in the past year, but you guys really gave me the guidance I so needed as a confused 16-year-old. I just wanted to come on and say thank you for all the guidance and love. Just wanted to say my symptoms really have almost gone away, like 90% gone! It's just the fucking depersonalization and sadness I feel that stay with me regardless of the change I've gone through. Even though I feel this way, life is only going to get better from here! To another year! Andrew A.K.A Originally Lizard_1.mp4
  17. 1 point
    So it's been six years and I've managed to get the non profit created and the first major study on hppd underway. We are looking at the beginning of 2019 to get the study going. In the interim I've worked rather intensely in raising awareness of hppd on social media. Word is getting around about this horrible condition especially among the pro psychedelic reseaarch community who sadly have shown the greatest resistance in accepting the validity of it and willingness to help. Our study may prompt them to rethink their position
  18. 1 point
    Here is my success story. I really hope this helps people because when I first got HPPD almost 4 years ago at age 23 I was a total train wreck and thought I would never get my life back. I am certain that this forum played a huge role in saving my life because for a long time I was seriously worried that I would have no other way out than to take my own life. This was definitely my darkest time and it makes me a little sick to think about it but I feel like I owe it to all the kids out there who are suffering. I'll get to the point. I took mushrooms for the first time ever and I flipped out. There seems to be a pretty standard story to this...total fear, a feeling that the trip will never end, it was a feeling I had never felt before. In my mind, I went to hell if it does exist. I woke up the next day feeling wierd, just off, sort of empty. I didnt think it anything serious until a week later, on new years day, I woke up after a night of partying in Las Vegas, and I knew something was wrong, I was sick, I was throwing up, and I was terrified, my vision was changing before my very eyes, everything was moving, and I knew something was wrong, the first thing I thought when I got up...the mushrooms were coming back to get me. I tried to tell myself it would be ok, that I was just sick from drinking, but it didn't stop. I didn't eat for almost a week, and I went to the hospital to get an I.V. to rehydrate me. In the ER, there was a true psychotic woman having an episode, It terrified me, because I felt I could somehow relate to her. I thought I had really lost it and I would never be the same. I'd heard of people "freaking out" and stories from the 60s, musicians like Brian Wilson going nuts on acid ect. and I starting thinking I was one of them now. I went home and felt so empty, but I couldn't even cry. My parents came back from a trip they were on, and it was like I didn't even know them, I was in my own little world. Things that were familiar were foreign to me, nothing was the same. As I worried more, things got worse, I started having panic attacks daily, I couldn't sleep, and my visual symptoms got worse. I had horrible headaches, nausea, paranoia, depression, visuals, the whole nine yards. At this point I think i was pre depersonalized, the panic was very strong, and it drove me deeper into a state of numbness. I was having terrible nightmares when I did sleep, finally, I think my mental anguish drove me into a state of numbness, where I couldn't feel anything around me, just like a zombie. I would say this was about 4-6 months into it. I started seeing therapists, and it helped a bit to have someone I could talk to because I didnt have anyone. None of my friends got it, and I was scared to tell my parents. At that point I wasn't even sure if they were real. I started reading on the forums, and this was a real game changer. I started to learn about some of the things that were happening, like the depersonalization/derealization, anxiety, ect. But more than that, I learned that there were people just like me, that I could talk to and would understand me, and even better that some people had survived it. This gave me what I needed, a little hope. Something to AIM for, a light at the end of the tunnel. Of course I was unsure and skeptical that I would get better, but at this point, in what seems like a rather odd reasoning, I decided that I couldn't be any worse off, and that the only choice I had was to get better, I really had nothing to lose. I knew it wouldn't happen soon but I thought, hell, I've survived this long (it was probably a year in) I can keep going, so I kinda just put my life on autopilot. I bought myself some time, I said, hey I'm just gonna deal with this day to day, not try to push myself too hard, and maybe in a few years I'll at least be able to function. That was a big deal, I accepted my situation, that it was gonna suck now, and that it would be a long time before I got better. During this time I had a lot of bad days, I also had some good ones. But every time that I had a good day, I kinda put that in my mental bank. Like saving pennies at a time. They add up. I made habit of doing things that would promote overall well being. That meant regular exercise programs, eating better, meditation, and yoga. I began to make steady improvements, I started having more good days, and things looked better for me. Someone once described HPPD as sort of like throwing a stone into the water, a huge splash, then lots of waves, ups and downs, and the slowly get less and less intense and I would totally agree. There was a long period of about 1 1/2- 3 years into HPPD that I began to get frustrated because I would feel great and think I finally beat it, then relapse again, I just wanted to be better, but again, time heals. This coming New Years day will be my 4 year anniversary of the day HPPD and I can say that this is behind me. In fact, I look back on it and I almost don't believe myself. It's almost like it was just a terrible nightmare. Which is how I had hoped I would look back on it some day. I want to put it behind me and never look back. But at the same time I want to help the kids that are on here because I know how terrible they feel and they need help just like I did. I owe it to someone because I survived and I want people to know that you can beat it but it takes work and commitment. I still feel a little lost, like I'm not sure who I am as a person, but I at least feel like I know where I am (haha). I just spent 4 years in a nightmare and now I'm awake. So I will try to offer some advice. The forums are great for helping you out, but don't spend too much time here. Don't spend hours on hours reading about peoples problems, about mental disorders. Education is good but at some point it will only make you more obsessive. Also, there is a lot of negativity here that will bring you down, because people that are on here are mostly here because they are having problems, not because they are doing great. For every 1 success story you will read about 20 horror stories. It's like watching the news, they only report on the bad stuff, you will never turn it on and have the reporter say "hey, everything is great." Again, do stuff that promotes good health, a healthy body is a healthy mind. Get outside and enjoy nature. I found it easier to connect with natural objects. Try to feel the sun, or the breeze on your face, little things like that. They can help you feel alive. Stop doing drugs, alcohol, tobacco, or limit your intake if you can. Smoking weed really made things worse for me. Talk to someone that can offer something positive and will understand your situation. If anyone ever wants to talk, on the phone, email, whatever, hit me up. Believe you can get better.
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