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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

hope1

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  1. We received $50,000 from the “HPPD Foundation” which covers half of the primary researcher’s salary. We can’t move forward without the other half.
  2. It’s dead because past venting, looking at treatment options and finally accepting this condition, not much else is offered here.
  3. I was kicked off that sub reddit by one of the admins Penguin something or other. Accused is spamming.
  4. So like I’ve had HPPD for more than 20 years and to say it’s been tough is a gross understatement. Anyway, I’m suffering really badly from depression and need medication. The question is which one. in terms of Anti Depressants, I was on SSRIs for nine months. During that time none of my HPPD symptoms got worse but I also had no emotional range. It was as if I was strictly and observer to life more than an actual participant. It was during this time and a few years that followed off the meds that I can say we’re the best years I had while living with HPPD. I also tried Wellbutrin & sinemet briefly but I didn’t experienced no benefit. In fact I believe the Wellbutrin gave me horribly vivid nightmares. So anyway, I’m at a crossroads in my life where I can’t continue feeling as I do and despite the self help recordings, affirmations, even forcing myself to smile as often as possible, inside I feel like crying all the time thinking how great my life of 26 years was before HPPD and what I’ve lost in the 20+ years that followed that I think I need to be medicated in order to function at a job and live. I never wanted to be one of those folks going through life as a zombie as that’s how I felt while being on meds but I don’t know what to do, nor do I know what meds to take. My understanding is that meds have improved somewhat since the Prozac/Zoloft days, I just don’t know what to do in terms of what to take. Compounding the fact that if I mention HPPD to a psychiatrist it’s like talking to a Dear in headlights. Anyone have any suggestions for me? Of note St. John’s Wart puts me in a manic state as does drinking strong caffeinated coffee. Might be relevant to the more scientifically inclined minds on this board. Thank you for your input. Hope 1
  5. I know that Grant writing is it’s own specialty. Have no idea what’s involved. The author of the article is a great guy and did a hellava job.
  6. Meet Wei! Wei is one of the researchers working on Dr. McConnell’s team who wants to pinpoint exactly where the damage has been done to the HPPD brain. How is her progress going? Not well, in fact not at all due to COVID and that fact that she’s just returning to work from maternity leave but even after she returns, no research will begin as there’s no money to pay her to do any work. This is why I implore the tens of thousands of HPPDers on this site to donate. Let family and friends know that there is a dedicated team with the best credentials working in one of the most prestigious universities around the world. The NRF is real and as a patient I want to go back to a pre HPPD state ASAP. Funding her work will take us there. PLEASE DONATE! www.neurogroup.org CV.WEIHE_SHORT_2018_12_16.pdf
  7. Meet Wei! Wei is one of the researchers working on Dr. McConnell’s team who wants to pinpoint exactly where the damage has been done to the HPPD brain. How is her progress going? Not well, in fact not at all due to COVID and that fact that she’s just returning to work from maternity leave but even after she returns, no research will begin as there’s no money to pay her to do any work. This is why I implore the tens of thousands of HPPDers on this site to donate. Let family and friends know that there is a dedicated team with the best credentials working in one of the most prestigious universities around the world. The NRF is real and as a patient I want to go back to a pre HPPD state ASAP. Funding her work will take us there. PLEASE DONATE! www.neurogroup.org CV.WEIHE_SHORT_2018_12_16.pdf
  8. Meet Wei! Wei is one of the researchers working on Dr. McConnell’s team who wants to pinpoint exactly where the damage has been done to the HPPD brain. How is her progress going? Not well, in fact not at all due to COVID and that fact that she’s just returning to work from maternity leave but even after she returns, no research will begin as there’s no money to pay her to do any work. This is why I implore the tens of thousands of HPPDers on this site to donate. Let family and friends know that there is a dedicated team with the best credentials working in one of the most prestigious universities around the world. The NRF is real and as a patient I want to go back to a pre HPPD state ASAP. Funding her work will take us there. www.neurogroup.org CV.WEIHE_SHORT_2018_12_16.pdf
  9. I know that Grant writing is it’s own specialty. Have no idea what’s involved but feel free to work within your network and find help. As an organization, we need all the help we can get.
  10. I’ve been instructed to recruit a grant writer able to apply for federal funding for HPPD research. Turing to all of you for help as I don’t know how to go about finding anyone to do pro bono work. I ask as we don’t have any money to pay someone. This comes from the fact that despite having a research protocol in place to investigate HPPD, hardly anyone has donated. Before Visual Snow was helped by a wealthy benefactor whose daughter has the condition through the Visual Snow Consortium, there was the Eye In Vision Foundation which successfully raised tens of thousands of dollars for research. We have a full time PhD who researchers neurovisual disorders willing to help us at McQuarie University in Australia. This team is the only team of credible researchers the Neurosensory Research Foundation has ever managed to find willing to help us out of thousands of inquiries over the span of 5+ years. Adding a grant writer to the team would help tremendously and expedite the research Dr. McConnell has planned. Until such time as a grant writer is found, much like the Eye On Vision Donors, it’s all in US to kick start research into HPPD. If you want this to happen, donate, volunteer, do anything you can to help. The suspicion is a that there is a genetic basis to HPPD. Given the massive work being done with genetics, there’s a chance relief could be at hand but it’s never going to happen unless we make it happen.
  11. We’ve made contact. He might be doing a follow up piece on our organization.
  12. Seriously, I’ve done all I can to help. The rest is on all of us as a patient population.
  13. Years ago, a gentleman affiliated with the “HPPD Foundation” approached me and committed $100,000 annually to fund research. Despite having created a non profit and assembling a research team who has drafted the most comprehensive protocol for this disorder, he has not donated any funding. This means it’s up to us. If we stand a chance at a cure, it’s going to come from friends and family who suffer with us, who want our minds restored. You can either donate in the foundation’s website or through Go Fund Me. https://charity.gofundme.com/o/en/campaign/fund-to-cure-neurovisual-damage-from-psychedelic-drug-use?fbclid=IwAR1mqpJEh5C8CpeCmBuqI_Kaz6KN4dNrw_1HqYx4zLtrXsLwdW-memMEgMQ
  14. Years ago, a gentleman affiliated with the “HPPD Foundation” approached me and committed $100,000 annually to fund research. Despite having created a non profit and assembling a research team who has drafted the most comprehensive protocol for this disorder, he has not donated any funding. This means it’s up to us. If we stand a chance at a cure, it’s going to come from friends and family who suffer with us, who want our minds restored. You can either donate in the foundation’s website or through Go Fund Me. https://charity.gofundme.com/o/en/campaign/fund-to-cure-neurovisual-damage-from-psychedelic-drug-use?fbclid=IwAR1mqpJEh5C8CpeCmBuqI_Kaz6KN4dNrw_1HqYx4zLtrXsLwdW-memMEgMQ
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