Jump to content

facesofhppd.com

Members
  • Content Count

    16
  • Joined

  • Last visited

  • Days Won

    6

facesofhppd.com last won the day on November 16 2020

facesofhppd.com had the most liked content!

Community Reputation

148 Honored Member

1 Follower

About facesofhppd.com

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

Profile Information

  • Gender
    Not Telling

Recent Profile Visitors

2,677 profile views
  1. Hello Everyone! I'm just a mom of someone living with HPPD for many years. I am also a psychologist researcher who has published on the topic, but, by no means, consider myself any sort of expert. I have been a participant in this HPPD ONLINE forum over the years and think it is the finest resource to help those with HPPD. Kudos to David Kozin! I have a website, FACES OF HPPD. I have been remiss in updating my website (www.facesofhppd.com), but I do talk with and exchange emails almost weekly with folks all around the world who have HPPD and who reach out. The most frequent request
  2. 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 i
  3. 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.
  4. 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 c
  5. 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
  6. 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 diso
  7. 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 h
  8. 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
  9. 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 PART
  10. 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"
  11. 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
  12. 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 upcomi
  13. 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 Godsen
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.