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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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Everything posted by hope1

  1. I've had HPPD for roughly 22 years. My visuals which were primarily floaters, a little static in my left peripheral vision and after images stabilized for many years. Two day ago the floaters increases dramatically in my right eye as well as a new phenomenon; some kind of flashing that I see at night when I move my eyes quickly like when I'm driving. So dark environment coupled with fast reflexive eye movement causing a flash effect. Is this hppd or could it be something else?
  2. I have had an incredible amount of stress of late. The flashing is gone but initial onset of hppd yielded floaters or floater like visuals. The eye doctor detected them in my right eye but not my left so what is it I have going in in my left eye. Going on 22 years with hppd. I hate it.
  3. I have been putting the time and effort in the development of the website, changing the layout a bit, adding content. Could really use some feedback and advice. I'm not scientifically inclined about this condition but reading up as much as I can and trying to articulate it in a manner that would educate the layperson as well as generate interest from the scientific community. The goal right now is to optimize the website and then send a pitch letter of invitation to put that board together. I really could use a hand. www.neurogroup.org
  4. hope1

    Does keppra really work?

    Do consider yourself cured?
  5. There is crossover in symptoms beteeen hppd and Lyme
  6. At times when I'm at my worst, I start thinking what can I do to get the wheels of research going on my own? I've looked up the rosters or many universities and sent indivduals performing reserach into neuroscience a brief email along with a link to the hppd foundation grant. Maybe this approach can be refined into a professionally written form letter to get the attention we deserve and get more heads involved in this condition? Admins-What do you think?
  7. hope1


    So it's been six years and I've managed to get the non profit created and the first major study on hppd underway. We are looking at the beginning of 2019 to get the study going. In the interim I've worked rather intensely in raising awareness of hppd on social media. Word is getting around about this horrible condition especially among the pro psychedelic reseaarch community who sadly have shown the greatest resistance in accepting the validity of it and willingness to help. Our study may prompt them to rethink their position
  8. hope1

    HPPD Non Profit Status Update

    The non priofit created and our first study for hppd is under ethics board review. 20 volunteers will be needed with a diagnosed confirmed case of hppd. Stay tuned.
  9. hope1


    Any update? Can you describe how you got HPPD and what your symptoms are? thanks
  10. hope1

    HPPD Non Profit Status Update

    Don’t know how to improve SEO. If anyone can help please let me know.
  11. hope1

    HPPD Non Profit Status Update

    Doing what I can to help this community
  12. The first multinational HPPD study is currently under IRB review. In a few months,the first steps will be taken to truly work on decoding and deconstructing HPPD.Will provide updates regarding the study as they come. surprising how many research physicians want to help!# CureHPPD www.neurogroup.org
  13. hope1

    HPPD Petition

    Please sign & share: https://secure.avaaz.org/en/community_petitions/World_Health_Organization_Health_research_and_funding/?cbDCpnb&utm_source=sharetools&utm_medium=copy&utm_campaign=petition-552055-World_Health_Organization_Health_research_and_funding&utm_term=bDCpnb%2Ben
  14. hope1

    worth trying a sleep study?

    What do you mean “Super Powers”?
  15. hope1

    HPPD Non Profit Status Update

    The final revision of the HPPD study is under IRB review. We expect it to be approved within a three month window. When released, I’m asking all of you to please share it on social media, among friends, family and to donate.
  16. Help The NNRF By Donating To HPPD Research! The Neurosensory Neuroregenerative Research Foundation (NNRF) is please to announced that is now officially an non profit 501c3 entity and can receive tax deductible donations to fund research into Hallucinogen Persistent Perception Disorder (HPPD) and Visual Snow (VS), disorders that historically have been grossly understudied and go under diagnosed. Our work is twofold; awarness & research. The NNRF currentlly has a donor who will match your donation dollar for dollar up to $100,000 for HPPD research. Research proposals and recruitment information will be posted in the first quarter of 2018 and will involve utilizing state of the art neuroimaging and genomic testing modalities. The planned sites are multinational with three in the United States, one in the United Kingdom and one in Australia. Such a collaborative effort to study HPPD has never happend which means your contribution will help tremendously in fully elucidating the neurobiological underpinnigs of HPPD which we hope will lead to a cure so if you, someone you love, a family member or friend has HPPD, please help donate and spread the word. This research will save lives and one day prevent psychedelic drug users the horror of EVER having to experience HPPD. Please Donate Today Thank You! *We are still working on developing a research team for Visual Snow so stay tuned for updates and fundraising information. http://www.neurogroup.org/donate/
  17. hope1

    Eeg, brain scan what would be different in HPPD?

    That’s because nothing would show up in those tests. QEEG and perhaps PET scan would.
  18. hope1


    Please sign up for the HPPD map. The more people we can quatify with this disorder, the greater our chances at getting federal funding for research. http://www.neurogroup.org/hppd-map/
  19. hope1


    So the the non profit is up and running. As the title suggests "Aggressive Advocacy", I managed to assemble a brilliant team of research scientists willing to investigate HPPD and formed a non profit. It's official, the NNRF is a 501c3. Please donate. www.neurogroup.org
  20. hope1

    HPPD Non Profit Status Update

    The non profit is up and running. Starting a seperate post with clinical tirals and donate information. Took me long enough but I'm a persistent bastard. www.neurogroup.org
  21. hope1

    Getting worse!

  22. hope1

    Getting worse!

    Yeah. It's been 21 fucking years and I do my best to keep on keeping on. I even started a Non Profit for HPPD to raise awareness and fight for research. I'm not giving up on myself and not letting HPPD win...
  23. hope1

    HPPD Documentary

    In part of my continuing work for the Neurosensory Neuroregenerative Research Foundation, a documenatrian has reached out to me from the U.K. who wants to produce a feature film on HPPD and needs people to interview with the disorder. If interested please contact me at info@neurogroup.org. Thanks

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