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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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facesofhppd.com last won the day on December 26 2015

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About facesofhppd.com

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    User is Verified PhD & Author (by David S. Kozin)

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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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