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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

palinoptical panopticon

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palinoptical panopticon last won the day on May 24 2019

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  1. If you ever get back your post, thanks for getting in touch with the board! Raising awareness would not only help sufferers immensly but also prevent further damage and it's great that this approach comes from a platform with such a massive range. I'm sure everybody hopes someone gets up the nerve to openly talk about it but unfortunately I doubt you will find a volunteer here. Nonetheless it would be great to see more about hppd from VICE. It definitely deserves much more attention.
  2. For everyone from the UK and Australia, please check this out: https://www.visualsnowinitiative.org/research/visual-snow-researchers-seeking-volunteers/ This is a huge deal, you can really help the research big time, so please make use of this opprtunity!!! This research is no joke. There is real legitimate hope.
  3. Man that sucks. How are you doing now? Is this this common with Keppra?
  4. https://metro.co.uk/2019/06/18/new-breakthrough-pill-could-cure-tinnitus-10006638/ For more detailed info: https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3000307
  5. The Visual Snow Initiative is working in cooperation with specialists on lenses/ glasses that are supposed to reduce vs symptoms. It's going to be available this summer. This info has been available on https://www.visualsnowinitiative.org/ but not anymore. However for further info you can contact them via email, they are happy to help.
  6. I had tinnitus last year and it's gone after 3 months. The ringing would made me go insane!!! It was so loud at times (on both ears) that I could barely focus on anything other than that. When I couldn't sleep the second night in a row, I decided to take just half a lorazepam and boom.. no ringing. Doctors don't like to admit as they're pretty addictive and not appropriate for a long term treatment, but benzos are the only really effective meds, no ginko or other bs. It's not an ear issue, it's a central nervous system issue. That's where benzos are effective. Unfortunately after the benzo wore off the ringing was there again. So I took lorazepam again a few times, my tinnitus decreased immensly, and when it came back, I didn't give it a chance to get my attention. When I took a shower I put some music on, same thing when I was driving or cooking. Before bed I listened to podcasts until I was sleeping and all together I just avoided silence or moments where I could hear the ringing. Eventually after not having paid much attention to it, it slowly but surely faded away until there was no ringing. One of the most important thing with stress related tinnitus is that you need to avoid stress at any cost! Stupidly I was given cortisone (stress hormone!!!) as a treatment first which made my tinnitus go through the roof. Long story short, bring your tinnitus to baseline with a benzo (of course be careful not to take it too long), avoid silence and stress and chances are good that your tinnitus fades away.
  7. So I got back from the appointment... The doctor was very patient tbh, there was none of the why did you take drugs bullshit and he was even aware of the symptoms that come along with VS and HPPD, but... he seemed to be convinced that fighting depression would be the target to aim at. After mentioning that SSRIs etc. just make the symptoms worse I suggested, based on many users' positive experiences, taking Keppra, Lamotrigine, Klonopin or Levodopa. According to him, any of those meds I asked for were too off label, which is anything related to HPPD I guess, but anyway there is no chance I would get them prescribed. Some of the side effects were too much of a risk, he would "commit a crime prescribing them". So instead I ended up being offered taking amber........ How are your neurologists dealing with your situation and how do you get them to prescribe that stuff? Do you think he was just hyperaware of the side effects?
  8. After having been waiting forever, I finally got a neurologist appointment coming on friday. However I'm still unsure what to ask for as it seems that there's no definite guideline to what's a good med to start with. So for those who have gone through some trial and error processes, is there a particular approach that makes the most sense or do you just randomly pick and see what happens?
  9. Nobody said that everybody with HPPD has a family history of mental illness, so no need to make that clear in the first place. But I'm very interested in the correlation between HPPD and mental illness you mentioned being mutually exclusive. Is there something to read about?
  10. I was wondering if some of you also have family members that suffer(ed) from some kind of mental illness. In my case there is a first hand background (schizophrenia and depression) and I've been prone to depression as well. So it's something that makes me curious. Especially in regards of HPPD there may be a correlation.
  11. Just received a reply from King's College saying that unfortunately they cannot consider me eligible for their recent studies because I'm not from the UK. So for the UK people here, if you like to participate in their recent studies on visual snow, please contact them or send them your questionnaire: http://eyeonvision.org/visual-snow.html I'm sure they're more than happy to drum up some support.
  12. That’s exactly what I find mind boggling, too. There must have been way more awareness in psychedelic circles such as MAPS, or even around Timothy Leary or Terence McKenna back then about HPPD than they actually pretend but they collectively chose rather not to talk about it. You can barely find references in the footnotes. I understand it’s been a rough road for MAPS to get where they are today, which is a huge succes story, and then it’s just the way politics work, they don’t want to admit flaws, the war on drugs is still going on, and people seek spiritaulity and try to compensate their materialistic lives more than ever, so there is huge finacial potential as well. But while all this hype around psychedelics, sorry “plant medicine”, is going on, I just hope MAPS considers telling the whole story and puts some effort into research on the dangers just as much.
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