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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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  1. Yesterday
  2. I've been told the SSL certificate is something that needs to be purchased from the domain registrar.
  3. forum costs are $45 a month. As of right now, i'm in the position to pay that, but if you want to port it to a new server, that would be cool. No idea about https error (I do not get this). Hopefully our coder friend above can help out.
  4. Last week
  5. Never give up. We're given this amazing opportunity to witness whatever "this" is. There are a number of us old folks in here who have dealt with this disorder for a long time and we're all doing surprisingly well. It's easy to fall into despair. I sure did early on. I look at it as a disability. If I had lost my eyesight or lost a limb, what can be done? Do I bail on life or get up each day and do the best I can? As for not caring, there are folks in here who do care. People trying different techniques, prescriptions, and lifestyle changes that might help. People share what they find and they wouldn't do that if they didn't care. Do the big corporate interests care? No, they just care about how much money they can squeeze out of everyone. It's heartless, and it isn't fair. As a species we could do so much better. This disorder can be so hard to deal with. Throw trying to live, and it's even harder, at times ridiculous. Personally, I wouldn't trade this opportunity to be here for anything with or without hppd. I realize I'm babbling again. I guess being a space shot is also permanent in my case. Hang in there, and I hope you continue to share in this forum. You never know how your experiences might help someone in the future.
  6. I have some positive words to share. But, I am losing power on my phone and sending out packages for eBay purchases of stuff. Jay - Do we know of a way to make it so this site doesn't show the security error for https? I should look at IPS and see, and what is the cost for the site and also I have a server in UK I trust with Rochen Host and I wonder about DNS control for email/etc. We are being charged for traffic that we were getting during out peak. You or whoever is paying for it. I'll be on later. I pretty much slayed most of the personal issues and an opening started where I am able to move forward. I just hate making and breaking promises. So, one day at a time. Here is my stress graph after I moved to a new location. I can't cheat these numbers. So, this is good.
  7. Keep on fighting mate, you never know what is around the corner. People might not care about hppd much, but the medical community DO care about anxiety and epilepsy, two areas where new meds could give us hope. If a non addictive Klonopin came to market that allowed me to take 2mg per day for ever, i'd consider myself able to have a decent life (not cured, but able to do everything I want). I am sure such a med is possible and the market for such a thing would make it viable for testing and research (big money to be made). It sucks that we are in a world where the illness that has the most potential for money making gets the focus, but that is capitalism for you. If you do need to move on from the forum, just know that you are always welcome. Stay strong, Jay
  8. I’m tired. I’m tired of trying, tired fighting and feeling so alone, tired of having to have put up with this bullshit for over 20 fucking years and quite frankly, because there has been virtually no progress in HPPD research despite my best efforts and that of others here. Nobody gives a fuck about us and there is no Calvary coming at least not in my lifetime. I suppose this is the ultimate act of acceptance; that this is how it is and as I get older and older, it’s just going to get worse. Fuck the scientific community, fuck the politicians who refuse to allocate funding for neurovisual disorders and a big fuck you to anyone having sold false hope which I suppose I’m guilty of doing albeit unintentionally. I truly thought I could hang on, live long enough till the day came where I could say I outlasted HPPD, I beat HPPD and I contributed in finding a cure for HPPD. That day won’t ever come. This is my final message on this group. I wish you all the best and I’m sorry I couldn’t do more.
  9. Hey everyone, I’m currently in India on a trip with family that’s partly for graduating high school, but mostly for getting medical tests done. I told my parents that I didn’t know what I could get done to find out how my brain changed after my OD on nBOME, but they told me that they’d try to get some brain scans and blood tests to see if there were any changes or permanent damage. Are there any medical tests that would pick up on my HPPD?
  10. I’m on the verge of giving up. progress is slow and I’m getting no help from anybody.
  11. 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...
  12. 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.
  13. 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:
  14. Faces of HPPD Infographic - Lewis, Doreen M. PhD View File HPPD RESEARCH SURVEY RESULTS! Link to Article: Post Submitter David S. Kozin Submitted 06/14/2019 Category HPPD Research Articles  
  15. Version 1.0.0

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    HPPD RESEARCH SURVEY RESULTS! Link to Article: Post
  16. Permanently? I suspect my visuals are permanent, so yes, it's possible for some symptoms to loiter around. Understand that I took a ridiculous amount of psychedelics at a young age. It doesn't mean anything is permanent in your case. That being said, many of my symptoms have vanished or have significantly moderated. Degenerative? I associate that term with something like Alzheimer's disease. I've had this condition roughly 40 years and my mind is as sharp as ever. I'm no expert on hppd. All I really understand is how it has effected me. I'm not sure if that addresses your concerns, but I hope it was useful.
  17. The problem here is that there is so much money behind psychedelics that insiders will risk nothing to jeopardize this gravy train of revenue. In reading the article there are psychedelic wellness clinics popping up, self proclaimed shamans appearing out of the woodwork and a booming medical tourism model all built around “consciousness enlightenment” so when this guy come here without ANY regard to our plight, I can’t help but be a bit angry because he and his colleagues are in a position to help, have access to technology, facilities, funding and resources that we don’t; in effect, he and his colleagues can help us but they won’t. its all about the money because if there were one patient class deserving the most help from psychedelic research, it would be us... https://www.google.com/amp/s/www.nytimes.com/2019/06/12/books/lsd-books-pollan-waldman-doyle.amp.html
  18. Earlier
  19. 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
  20. 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
  21. Reply to K.B. Fante: Thank you for the feedback on the research. Visual Snow and Depersonalization are experienced by 96% and 92%, respectively, of the HPPD population within the study. Interestingly, the National Organization for Rare Disorders (NORD) mentions HPPD in their description of visual snow: They state, "Visual snow has been considered to be the same condition as hallucinogen persisting perception disorder (HPPD)". Link: https://rarediseases.org/rare-diseases/visual-snow-syndrome/ I have contacted NORD, and asked that HPPD be added to their database as its own rare disorder. Indeed, further studies of the overlapping above conditions are important to understanding HPPD. There are so many directions to take further research, and it is difficult to ascertain which, of all the reported symptoms shared among the population, are the most concerning to focus upon. While visual snow and depersonalization may appear to be the most common, there are other very serious complexities that affect quality of life, too. ANY research about HPPD is valuable, I think. It seems, unfortunately, there are only a handful of key researchers in the medical community who publish. As for me, I am limited in the work I can do in research because I am an independent researcher (i.e., a little guy NOT associated with a clinical research center or who has access to patients). As such, my research would be limited to survey studies, literature reviews, and opinion pieces. Additionally, my HPPD research is unpaid sideline work (in my spare time) and I wish I could do so much more! Thanks again for the feedback! I plan to do what I can to further studies on the topics AND communicate about the disorder to heighten awareness. Doreen Lewis, PhD
  22. 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.
  23. 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
  24. If I don’t abuse any substances and just live, is HPPD degenerative? That’s my worst nightmare. I can’t tell if I’m just noticing more symptoms or they’re actually worsening.
  25. Hi, my name is Fernando, I'm from Argentina. 3 weeks ago I had an 'incident' with a marihuana brownie. I ate 2 slices, it was the first time I tried marihuana in brownies (I smoked sometimes in the week). An hour later, I had delirant ideas coming to me (fear, despersonlization, bad thoughts, fear to lose control). I was in a constant loop of fear during 3 hours. I had visual allucinations (red lines and dots). After the incident, I spent a week feeling afraid of everything, and with 2 panic attacks. I started therapy, and I'm feeling better now. However, I still think that I have any visual disorder since the incident. The lights seems more bright, and when I look around the light I see a kind of "waves". I dont know if its HPPD or just paying more attention to those details that I didnt see before. Should I go to an eye specialist? Thank you for reading.
  26. 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.
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