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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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mth97 last won the day on September 13 2019

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  1. @Spartan thank you so so much for helping! We appreciate the braveness in telling your story. It helps so much! If you have any other questions, feel free to message me!
  2. Hey guys! I’ve teamed up with other members of this group to work on a larger documentary that’s not only including stories from people who have HPPD, but also touching on some of the research that’s going on right now. We are still looking for people to share their stories. Through this platform: https://hppd.typeform.com/to/hDPU0j?s=R Your answers can be completely anonymous if you choose and you also have the option to tell your story with video or just audio. This would be incredibly helpful! I hope everyone is doing okay. I’m always here to talk ❤️
  3. Meeting with Dr. Henry Abraham on Saturday! Anyone have any questions that you would like me to ask him for the documentary? Hope everyone is doing well ❤️
  4. Nope! But because I remember having faint visual snow occasionally, I believe that some people may have a predisposition to HPPD. So if you've experienced visual snow in the past, maybe you should tread carefully or better yet, not use hallucinogenic drugs at all.
  5. Hi everyone! If you haven't seen it already, several months ago I posted about creating an animated documentary about HPPD. So far, it's going great! I've finally planned a flight to meet up with Dr. Henry Abraham and wanted to ask the group if you had any questions that you'd like me to ask him during the interview. (Questions that would benefit the documentary and would help convey what HPPD sufferers face). It's pretty hard to get in touch with Dr. Abraham, as I'm sure many of you tried, (I tried myself when I first got HPPD and sent him countless emails through his website asking for help to which I received no responses to) so if you have a question you've been meaning to ask, now is your chance! I also have been looking for females to interview (either audio or video) because so far I only have males and would like more female representation if you are willing! I will be in Sarasota, Florida soon, so if anyone is nearby and would like to be filmed, let me know! And I'm currently located in Blacksburg, Virginia if anyone is close to here. Thanks for everyone's support
  6. When I was very very young, (maybe about 5) I remember before I went to bed I would look up at the ceiling and see visual snow and would stare deeply into it and start to see colorful patterns. When I first got HPPD, the visual snow was terrifying because of it's intensity, but somewhat familiar. The visual noise only happened rarely at night but it was kind of like a game to me to see if I could manipulate the patterns on the ceiling. These patterns, of course, were extremely faint and I was not experiencing a full blown trip as a child. But yes, I have memory of visual snow and pattern phenomenons and also have HPPD.
  7. So glad to hear that people are interested in participating. If you don't wish to comment and you are interested, feel free to message me!
  8. Exciting news! I've reached out to Dr. Henry Abraham (for those of you who don't know him, he was the lead researcher of HPPD who also coined the term and put it in the DSM) and he would like to be a part of this documentary. I'm planning on interviewing him during the winter and will be taking a trip down to Florida. If anyone in the US is on the way (East coast between Virginia and Florida) I would love to stop by and capture video and interview if anyone is willing! (Reminder that all identities can be hidden to protect you). I am so excited that Dr. Abraham will be a part of this and can take this documentary to the next level. Again, if anyone is interested in being a part of this whether it is interview, sharing your artwork, sharing writing, voice recordings-- ANYTHING do not hesitate to reach out!
  9. Thank you so much! I'll message you with details!
  10. Jay, thank you so much for your interest and being willing to film yourself! That is a great start for the documentary and I really appreciate you responding. In terms of other types of interview, I'm also seeking out those who may be comfortable showing their face. The documentary really all depends on how many people are willing to share their story and the way in which they want to share it. One of the things that I'm best at is something called rotoscoping, which is tracing over each frame of a video so that it produces a realistic animation (this was the method in the music video Take on Me). If I were taking the rotoscoping approach, I could trace everything except for the details of the face. So far, I've only had one person message me who is interested, but I really hope that people can see how much this documentary could help the public better understand and empathize with what we go through day to day. I'm guessing people may not be responding because of the anonymity issue, but even if people are willing to share their writing and read over it, I could change the pitch of their voice and make an animation that can visually represent what they are saying. Is there anyway to pin this post so more people see it? I really think this documentary could end up making a difference in terms of awareness and empathy towards people with HPPD. If certain people really respond to it, more research could be done.
  11. Hi! My name is Madison and I've had HPPD for 1 year now. It has improved incredibly with the right medications and changes in lifestyle, but I still suffer from it everyday. I am a documentarian and animator and want to accurately depict the struggles and stories of people who deal with HPPD. I think the best way to depict the lives of those who have HPPD is through the eyes of someone who has it as well, instead of someone who may or may not sympathize with those who have HPPD. My goal is to spread awareness through personal anecdotes, poems, visual representation through animation, interview, and sound to make a documentary. I am seeking out a large variety of people-- those who were just diagnosed(or self diagnosed), those who are fully recovered, those who have had it for years, and those who are professionals/doctors/knowledgeable about HPPD. I have a close relationship with my doctor who worked under Dr. Henry Abraham so hopefully I could interview him as well.This project I expect to take over the span of 2-3 years. I really want to make it the best that it could be. If you are interested at all in making this happen, whether you are willing to be interviewed (even with your face blurred out to hide your identity), or if you want to share your writing/send audio of you reading it over, or any way that you feel like you can contribute would be fantastic. I am willing to travel far to capture footage (right now I am based in the east coast). Please either comment or message me if you are interested; our stories need to be told.
  12. To all people who have tried Keppra for a little while and had some negative effects: please try to stick with it! For the first two weeks I was extremely irritable, sleepy during the day and awake during the night. I was actually even a little bit aggressive, which is so out of character for me. The next month with Keppra the initial side effects seemed to go away, but my HPPD persisted. After being on Keppra for 2 1/2 months my HPPD is almost unnoticeable. I still have visual snow, but it’s just not as bothersome as it used to be. I think the worst side effects that I used to have with HPPD were my DP/DR. For the first month of my HPPD, I could barely communicate with others. After awhile, the DP/DR subsided but I still felt like I was in a dreamlike state at times. Occasionally people looked like cartoons and when I was in huge crowds of people I would completely lose myself within it. I’m so happy to say that with Keppra I no longer have this feeling anymore. Yes, visual snow persists. Yes, when I move my phone around at night there are tracers. But it’s really not bothersome to me anymore. I’m currently in college as a Creative Technologies major and am hoping I can use some of these visual experiences to my advantage instead of feeling like I have a disability. To everyone who is still suffering please please please stay positive. There are so many options to make everything better. I’ve also delved into TM (transcendental meditation) which gives me some relief from general anxiety. I hope this post helps and if anyone ever needs to talk feel free to message me! - M
  13. Hi Redrose, To me, this sounds like HPPD. I can relate to so much of what you are experiencing. Even when you mention the world moving as you chew, I’ve felt that countless times. About 5 months ago I was diagnosed with HPPD and I thought my life was over. I was studying abroad during college and had to be evacuated from the country because I couldn’t step outside of my room without having a panic attack. People looked like cartoon characters, objects moved in my peripheral vision, walls would pulse and breathe amongst many other terrifying symptoms. After about 2 months, the visual symptoms died down, although I still had the visual static and that weird dreamlike feeling. I’m now prescribed a very low dose of klonopin and Keppra, which has done wonders for me. I would say almost all of the symptoms have gone away except for the visual snow. My advice to you is to reach out for help, whether it’s your parents or a psychiatrist and try not to be discouraged. It may take a couple doctors to fully understand what you are going through. I promise you it’s going to get better and this online community can be extremely helpful in terms of support. Try not to go crazy with researching the symptoms and stories. I’ve found that the more I thought about the symptoms, the more I’ve noticed it. TM (transcendental meditation) has also helped me quite a bit with my anxiety. If you need any more advice or you just want to talk, feel free to message me! I promise you that things are going to get better! :)
  14. Hi! I recently was diagnosed with HPPD and have been struggling with it for the past 4 months. The first month was really bad— ceiling fixtures spinning, walls breathing, sound synthesizing along with really bad DP/DR. This was also happening while I was studying abroad not knowing wtf was happening to me so I had to be evacuated and sent home. After being on Klonopin and Gabapentin for the past few months, my symptoms have improved greatly. Now my only visual symptoms are visual snow, tracers when it’s dark, and auras around objects and people. While these things still bother me, it’s nothing compared to what I was experiencing 4 months ago. The thing that’s really killing me right now is the brain fog. My short term memory is awful along with basic things like remembering the names of people who I’ve known for years. I’m going to be heading back to college in the next couple of weeks and I’m really really nervous. I was wondering if anybody knows of any supplements or methods to get rid of brain fog. My college is kinda far from home so I’d like to try to get anything that could possibly help me while I’m still with family and my therapist nearby. Any suggestions are helpful . Also! I am thinking of starting Keppra but was wondering who has had good/bad experiences with it. - M
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