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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

hope1

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Everything posted by hope1

  1. hope1

    HPPD getting worse over time

    I was doing ok until I developed low back and pelvic pain. Shit changes as you get older and with it coping mechanisms.
  2. hope1

    Violent Coughing

    Whenever I get the flu, serious cold or bronchitis, boughts of violebt coughing produce swirling tiny colorful spots in my vision. What does that signify?
  3. Some if not most of you may know I started a non profit for HPPD and VS with the help of several people with HPPD. After many years of hard work we have a neuropsychiatrist, Dr. Harry McConnell, on board who has taken up the mantle from Dr. Abraham and has designed the only fully comprehensive research study on HPPD. It will cover genetics, autoimmunity and utilize several means of neuroimaging. I’m encouraging all of you to get your family, friends even yourselves to donate toward this study because if something remarkable is found, it will change everything for us as a patient community. http://www.neurogroup.org/donate/
  4. hope1

    MAPS research

    There’s literally a ton of publications suggesting mdma is a neurotoxin
  5. There’s a new test FM/a that screens for fibro. I’m working on getting it.
  6. hope1

    My HPPD is gone!

    Some people spontaneously bounce back within a 5 year window. others don’t.
  7. hope1

    HPPD Case Studies

    There’s actually a resurgence of studies being done with psychedelics for therapeutic purposes. Sadly, these groups choose to ignore HPPD. There is a study in final irb review. Talks with a serious philanthropist are underway. Testing site may include London , Australia and America, specifically Baltimore.
  8. hope1

    HPPD Case Studies

    http://www.neurogroup.org/publications/medical-journals-and-resources/
  9. You can probably get all the funding you need from Paul Domb, a very wealthy individual who has a daughter with VS. my understanding is that he might be working with Dr. Goadsby independent of the eye on vision foundation.
  10. hope1

    HF10

    I’ve suffered from pelvic pain since 2006 on top of hppd since 1996. Had a handle on HPPD sometime in 2003 then the pain started and ruined whatever progress I’ve made. In my desperation I have decided to get a spinal cord stimulator to help me with the pain but the mechanism of action is as follows: “The mechanism for pain relief with conventional SCS is now known to be more complex, and much of what is known comes from laboratory and animal studies. Relief of neuropathic pain by SCS is mediated in part by spinal mechanisms whereby there is wide dynamic range (WDR) neuron suppression in the dorsal horn. This involves spinal gamma-aminobutyric acid (GABA) systems and their effect on excitatory amino acid (EAA) activity [3,4]. The cholinergic system is also thought to be involved, as animal studies have shown dorsal horn acetylcholine release during SCS [5]. Supraspinal mechanisms of SCS occur via descending inhibitory pathways and are also thought to contribute significantly to the effects of SCS” The most obvious question will this device make my hppd worse? Hoping Visual or David May know. thanks
  11. hope1

    Cured hppd 100% full recovery

    Your visuals are also completely gone?
  12. hope1

    Recommended Drs? Australia

    Dr. Harry McConnell Griffith University
  13. hope1

    Suicide

    I don't know about that. My impetus for starting the foundation was self preservation. Thought if I could beat one problem maybe I could limp through life with the other until a solution could be found. There's nothing great about me. Don't even think I'm a good person just a burden to my family.
  14. hope1

    Suicide

    I hate to say it but I’m strongly considering it as I am at a point where I am unable to take care of myself. The thing is HPPD didn’t bring me to this point asi found a way to live with it,to function,have friends, work, be in relationships even got married and had a kid but I was struck with a pelvic pain disorder about a decade ago which robbed me of my coping mechanisms like my ability to work out. It destroyed my marriage and has me living from hand to mouth all the while in pain, pain which is exacerbated my anxiety. My last ditch effort to control this problem will be with a spinal cord stimulator implant by the end of December. 2019 will either be the year I’ve renewed my lease on life or the year my account goes dark permanently. I just can’t handle the pain anymore. Honestly, between HPPD and pelvic pain, I’d settle for just HPPD. My life is hell.
  15. 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?
  16. 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.
  17. 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
  18. hope1

    Does keppra really work?

    Do consider yourself cured?
  19. There is crossover in symptoms beteeen hppd and Lyme
  20. 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?
  21. hope1

    AGGRESIVE ADVOCACY

    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
  22. 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.
  23. hope1

    Naltrexone

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