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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

facesofhppd.com

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  1. 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.
  2. 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.
  3. 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. 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
  5. 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
  6. 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
  7. Whether you decide to see a psychologist, a licensed social worker, counselor, priest/pastor, life coach etc., they are all trained professionals and skilled in the methods to put the client at ease... to establish the rapport, guide the therapeutic process, help you by gently drawing out the areas of your life you'd like to address. If you find one who doesn't do those things, don't go back and find another one. Counseling can and should be healing. Nobody should feel alone with HPPD, but they sure do because of the condition's rarity and the community's misunderstanding of it. A counselor can bridge the areas of your life that feel broken by helping you reframe your life situation into something manageable. A huge symptom common with HPPD is anxiety... not to mention the reclusive lifestyle so many sufferers resort to because of the difficulty with lights and noise. Guilt/regret can be a big problem... blaming yourself for past drug use. A counselor can ease such burdens and provide resources such as coping skills and healthy ways to process information and change your own "self talk" to more positive messages and affirmations of self-worth. Many people with HPPD report that as time marches on, they are "better"... sometimes it is NOT because symptoms have alleviated, but because they have learned to work around the symptoms and acclimate. Part of the adjustment is mental... ACCEPTANCE of what is. In this process is the possibility of creating a meaningful life and finding joy DESPITE the difficulty. There is hope. Everybody needs a soft place to land... And, friends and well-intended family members sometimes fail to say the right things or find patience when you need to unload. A counselor can fill that void. Wishing comfort to all! Doreen M. Lewis, PhD www.facesofhppd.com
  8. Please visit the FACES OF HPPD website to participate in a survey. WHAT IS THE RESEARCH ABOUT? This is a survey about HPPD. The survey measures common traits about HPPD patients. Questions on the survey are related to HPPD symptoms, diagnosis, and treatment. You are eligible to participate if you are English speaking and are at or over the age of 18. You must be diagnosed with HPPD by a medical professional. It is also necessary to have internet access to take the survey. This research includes an option to participate further to "tell your story" in your own words. WHAT DOES PARTICIPATION IN THIS RESEARCH STUDY INVOLVE? If you decide to participate in this study, you will be asked to provide information about you and your condition on several factors. Your participation in the survey will take about 10 minutes. WHY ARE YOU BEING ASKED TO PARTICIPATE? You are invited to be in a study that furthers research about HPPD. The study is part of the researcher’s work to help further education about HPPD. When completed the survey may be a published in a journal, magazine, or book. Your participation is confidential and your identity will remain anonymous, except to the researcher. Your participation is important because you represent the population of HPPD sufferers. Your responses will be analyzed along with all survey participants to help determine what factors play a role in HPPD diagnosis and management of the disorder. For more information, visit www.facesofhppd.com or please contact the researcher, Doreen M. Lewis, PhD, at info@facesofhppd.com Thank you! Doreen M. Lewis, PhD
  9. This is in reply to StateofRegret. First, THANK YOU for the helpful comments! This is exactly the kind of feedback that helps. In any survey study, there are "limitations" and these such limitations can be discussed in the results of the final report. I appreciate the areas of the survey you have questioned, some of which we are able to correct without compromising the integrity of data already collected. To answer your question about drug categories: In the design of the survey, it was considered how to present drug "names" (for example: should the survey reference drug "street names" for those who may not know the formal category? And, could such a list be created that is exhaustive? We didn't think so... ) It was decided to use formal psychiatric drug categories (each category is intended as a stand-alone). The drug "categories" list was provided to me as a standard list that is used in psychiatric settings and was used in previous research. I am not a psychiatrist or physician and am relying on professional consult/assistance for such information; that said, I will verify the use of the term "narcotics" to see if "analgesic" is a more proper term to add as a description to that checkbox field. The "Did You See a <medical professional> for HPPD?" questions were reduced to YES/NO response, simply. And, StateofRegret, I thank you for advising me that the address collection fields did not include space for "country" and "province," which now does. Yes, we want to include ALL participants who are HPPD diagnosed. Also, just as a matter of clarification, there are two parts to this study: one, is a quantitative data collection survey (the research part), which will be statistically summarized in a report. It is hoped this will contribute to the literature! The second part is case study/interviews of HPPD patient stories that is being collected. Participants may submit their stories in writing or participate in a telephone interview. Each story will be written up and returned to the participant to review for its accuracy, edit, and provide approval. If anyone has questions, please feel free to contact me! Thanks! Doreen M. Lewis, PhD Email: info@facesofhppd.com Website: www.facesofhppd.com
  10. Dear Lobotomizer, I just saw your comment and emailed you privately to try to reach you to find out the problems and holes that you see in my survey. I appreciate any feedback/help to make this process work, so please contact me. Thank you so much! Doreen M. Lewis, PhD www.facesofhppd.com
  11. Reply to Odisa and Chris, Odisa - Thanks for the feedback and please know your identity in association with your story would not be publicized (collected only for the author's eyes) and you may use first name only or another chosen name you'd like to use to maintain confidentiality. The only reason contact information is collected is for the author to communicate with you. You would have a chance to review the story before publishing. Chris- Oh ouch! Please let me state to you with strong emotion that this is no money-maker to line someone's pockets or post here to "promo" an upcoming book. YES.... I hope there are proceeds! But please know, part of the proceeds are towards helping HPPD. That may include providing gratis book copies to those who cannot afford it as well as spreading the word to medical professionals. If a traditional (hopefully major) publishing house takes it to print, there are restrictions on posting entire contents online. I plan to expand the Faces of HPPD website with content that is scientific, documented and founded in the literature. Thanks! Doreen
  12. I am here for several reasons. Foremost, my 23 year old son has HPPD and I am personally touched by this. His struggles parallel what others feel and experience as written here. Living with HPPD is a private hell – seems. It is met with misunderstanding and judgment from an insensitive society and an uninformed professional medical community, generally speaking, with exception of very few doctors who are HPPD champions. It seems most members here are unofficially diagnosed… seeking information what to expect, where to go, how to feel better, lead life unencumbered. What a Godsend this forum is. I am here because I believe HPPD sufferers need advocacy… This means caregivers and the community leaders are needed to speak for them when they cannot, to represent their needs, to make a difference, to carry a torch and make inroads in research and awareness. To YOU, I extend my hands to help, my heart, my time. I am a psychologist, researcher, and writer…. and I care very, very much. So many faces, different places, the stories so similar…. Too little resources, no place to turn, just each other to help. I am only one person, but bring it on… and let’s get started to do something good. Please visit my website, Faces of HPPD www.facesofhppd.com which is established as a project to compile information about HPPD from those who have received official diagnosis and treatment, so that all can learn about living with HPPD. Faces of HPPD is not intended to compete with this forum… but to expand the sharing of resources and knowledge. I hope in some way I can be a force to make a small difference. God speed to each and everyone of you! Doreen Lewis, PhD (in Florida)
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