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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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  1. I think we can all agree that general awareness of HPPD is sorely lacking. Indeed, the majority of us here had no or little idea of what it was until we developed it. Odd that everyone hears so much about flashbacks, yet absolute nothing of HPPD, when I'm sure everyone here would gratefully trade this perpetual debilitating disorder for occasional, transient "mini-trips". Indeed, I know of a heck of a lot of people dealing with HPPD yet none who experience "flashbacks" in the traditional sense. The thought of this lack of awareness causing more and more young, naive people to develop this disorder and suffer as much as all of us have is deeply distressing. Not to mention the amount of people out there who undoubtedly have symptoms without being aware of exactly what's going on who will likely use more psychedelics until their condition is more severe. I can't help but feel compelled to do my best to get the knowledge out there to those who are likely to benefit from just being aware of it, as I wish I had been. Hence, I think it'd be great to compose a concise, non-alienating, realistic information pamphlet along with a website where the information is far more easily and readily available than browsing a pretty imperfect forum for tidbits of anecdotal data, or piecing together the knowledge from the various erowid/wiki/webMD/neurosoup and so on articles which all omit very important aspects of the nature of the disorder. I'm not entirely sure of the processes involved but I'm sure through contacting philanthropic mental-health/drug recovery organisations and the like it'd be possible to get HPPD more into the public eye. I'm imagining government or privately sponsored grants to print the brochures wouldn't be extremely difficult to procure either with the right approach. These, along with perhaps posters and such, could then be distributed at nightclubs, raves, head shops, etc. Of course a lot of people will ignore them, but they'll be far from entirely unnoticed. I'm sure all of you agree that this is a necessary, noble pursuit, and I've decided I'll dedicate my moments of clarity to endeavouring to make this a reality. Insights, advice, and help would all be greatly appreciated!
  2. I think this would be a really great thing to do, because undoubtedly a lot of people who are curious about HPPD wind up here and just lurk for a little bit. This is probably the best resource for information on what HPPD is really like; the Wikipedia page misses a fair bit and its 'Co-existing Problems' section is far too brief. Also, there's definitely value in hearing about it from people who've experienced it/are experiencing it/etc. Presently though I think those lurkers who are just wanting to get a relatively quick understanding of HPPD will have a difficult time of it here because all the information is so spread our amongst different threads; they'll undoubtedly stumble upon terms and such and have no idea what they mean (what things like "starbursting" and "ghosting" are, why people talk about drugs like Keppra, etc.) and possibly miss important aspects of the disorder (the fact that it can be made worse by further drug use, just how bad and crippling it can get, which medications are bad, the less obvious or well-known symptoms, etc.). The forum is essentially exclusively geared toward people who already have HPPD pretty badly - for us who are on here regularly and have been dealing with HPPD for a while it's okay because we've done a lot of reading on the disorder, read through most of the threads, found the important older threads from ages back, etc. and so generally know what's going on, but I think someone from outside stumbling on here would definitely feel pretty confused and alienated. My primary concern is that somebody who's recently gotten HPPD symptoms will start looking them up, just check out the first few things they find, conclude it's not that big a deal and just go on acting how they would've - precisely because that's exactly what happened to me, and I doubt I'm the only one. I definitely wound up on here at some point, felt like the few things I saw were confusing and assumed most people's situations weren't that bad and that they'd probably been using drugs for a long time. Obviously not at all the case, but when I probably only looked at the few most recent threads in the main forum or something I likely saw very specific threads that were only dealing with some minor aspect of the problem, and would've lost interest pretty quickly. Just looking at the Wikipedia page you could be forgiven for thinking it wasn't that big a problem at all - it deals primarily with the persistent visual distortions and only very briefly mentions the connection to depersonalisation and anxiety, and doesn't mention at all issues with memory, general cognition, etc. and just how fucked up some people's lives get. The erowid page only mentions the visual problems. Both pages very prominently mention that anxiety and depression are quite likely due to being concerned by the visual stuff - definitely some truth to that, but I think a lot of us would say that our drug use has directly caused the mood issues. There are a lot of people who think that the mild visual symptoms they have are cool or interesting, or at least aren't bothered by them. I think it's very important for those people to know that any visual symptoms are a cause for concern and that they should stop all hallucinogen use to make sure they don't develop any of the worse symptoms. They might even be experiencing the co-morbid cognitive issues and fail to connect them with the visual things and just assume they're independent of each other - I recall sitting in school and researching what aspects of my diet might've been contributing to the anxiety and brain fog I was experiencing. Then heading to a friends house to trip for a weekend to take my mind off it. Ha. Yeah, in short I think it'd be a really, really good thing to have a very prominent and thorough info page for people who've stumbled on to the site that effectively says, amongst other things, "if you're experiencing symptoms of HPPD stop using drugs now because you're at high-risk of fucking your life up badly". Thoughts?

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