Siren001 Posted October 9, 2023 Report Share Posted October 9, 2023 On 10/6/2023 at 3:59 PM, TheForeverTrip said: I thought it was over, and then I read a article about how living with this can actually enhance our perception of the world, that some people with our disorder have actually looked at it as a positive thing, like you are in tune to the universe in a unique way. Granted these thoughts can be dangerous for people also suffering from a schizoaffective disorder, but its helped me. This is the largest forum but there is so many of us out there that might not even know they have it. According to the DSM-5, 4.2% of all hallucinogen users experience HPPD-like symptoms. Think about all the possible rockstars that have suffered from HPPD in the 60s/70s, who knows maybe the beatles started experiencing similar symptoms. I wish I could post the article I read, but it doesn't seem like I can paste links, it’s called On Perception and Consciousness in HPPD: A Systematic Review from frontiers. I really think we are in the generation where we find a miracle cure. If not something that will make it much much better. I think it will come off actually curing another disease. I have found hope and hope others will! 4.2% experience symptoms distressing enough to seek medical attention. The vast majority endure it without seeking medical attention. There’s nothing good about this shit if you’re on the severe side of things. Link to comment Share on other sites More sharing options...
Jay1 Posted October 10, 2023 Author Report Share Posted October 10, 2023 19 hours ago, Siren001 said: There’s nothing good about this shit if you’re on the severe side of things. You shouldn't speak for everyone. I have had a few positives from severe HPPD, namely it stopped me taking drugs when other friends moved on to heroin, they are dead, went to prison or living miserable lives now. Not many got out to a place of contentment. I also feel like I am more empathetic and in touch with nature and my surroundings. Probably more creative too, as I use creativity as a way to escape. HPPD is fucking shit, no doubt... but you can still have a positive mindset that benefits you. Don't let HPPD drown you. 1 2 Link to comment Share on other sites More sharing options...
Siren001 Posted October 10, 2023 Report Share Posted October 10, 2023 My POINT is that HPPD is way more common than thought and must be researched that way there’s a chance we could go back to normal. You really glorify this thing of ours way too much. 4 Link to comment Share on other sites More sharing options...
help123 Posted October 10, 2023 Report Share Posted October 10, 2023 27 minutes ago, Siren001 said: My POINT is that HPPD is way more common than thought and must be researched that way there’s a chance we could go back to normal. You really glorify this thing of ours way too much. It's horrible, I have HPPD for one year now and because of it ,I missed so many oportunities.........I work and live a pretty normal life,I didn 't get any benefit from it,only bad things like depression,anxiety etc. 1 Link to comment Share on other sites More sharing options...
help123 Posted October 10, 2023 Report Share Posted October 10, 2023 I hope one day all our symptoms will be gone away 2 Link to comment Share on other sites More sharing options...
Jay1 Posted October 10, 2023 Author Report Share Posted October 10, 2023 2 hours ago, Siren001 said: You really glorify this thing of ours way too much. If that's what you got from my post, you're an idiot. 1 3 Link to comment Share on other sites More sharing options...
SomebodySomewhere Posted October 11, 2023 Report Share Posted October 11, 2023 (edited) 14 hours ago, Siren001 said: My POINT is that HPPD is way more common than thought and must be researched that way there’s a chance we could go back to normal. You really glorify this thing of ours way too much. It really needs to be said at this point: you are a total fucking cock. Fuck off back to Reddit you over-opinionated piece of shit. Edited October 11, 2023 by SomebodySomewhere 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 11, 2023 Report Share Posted October 11, 2023 3 hours ago, SomebodySomewhere said: It really needs to be said at this point: you are a total fucking cock. Fuck off back to Reddit you over-opinionated piece of shit. 2 Link to comment Share on other sites More sharing options...
Siren001 Posted October 12, 2023 Report Share Posted October 12, 2023 Pretty much feel this is the overriding message of the OP. 1 Link to comment Share on other sites More sharing options...
Jay1 Posted October 13, 2023 Author Report Share Posted October 13, 2023 I'm sure that seemed funny in your head. High five for trying though. As someone else said, maybe reddit is more you kind of place. Angry and bitter seems a good match for /hppd 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 13, 2023 Report Share Posted October 13, 2023 If I’m angry and bitter it’s because of people who sugarcoat this shit. Accepting it is one thing but there are organizations centered specifically around diseases that are making headway toward effective therapies, even cures, especially in light of medical technologies coming down the pipe that will revolutionize health. But not for HPPD. We aren’t organized, passionate and driven at all for a cure; not here, not on Facebook and certainly the fuck not on Reddit and that’s the problem, that’s why posts that profess hope are bullshit. Sorry to piss on your parade but it’s meant not so much to hurt anybody but to get some critical thinking and some inspiration going on here! Does HPPD get better? it could. is getting old with serious HPPD fun? Absolutely not which is why it is vital that somehow, someway we get are shit together and support the MacQuarie Protocol. If not, then there’s no reason to bitch and moan. There’s actually research available to figure where the brain has sustained damage from psychedelic drug use that is being neglected by the very people it would benefit the most?! Seriously, GTFOH…. Link to comment Share on other sites More sharing options...
SomebodySomewhere Posted October 14, 2023 Report Share Posted October 14, 2023 @Siren001 Your actions vs. your supposed intentions are quite different. You say you're just trying to be helpful, and then you downvote anyone you disagree with, insult pretty much everyone, meme this stupid, zoomer, crybaby bullshit at people, not to mention the PM you sent me whining that I had the horrible nerve to criticize you. I have no sympathy until you stop being a dick to everyone (intentional or not, that is what you are doing and continue to do). If you want help and support, this is a good forum for that. If you want to be a know-it-all and intend on making everyone feel bad then please fuck off and don't come back. You also do not know the history behind this forum, and the amount of research that has been attempted/done before. Some of that isn't your fault: the forum had a problem at one point and many old posts were lost from my understanding. You might be able to find nodid.org, created by this site's founder, through web archivs, that also owns this site. Nobody has been sitting by simply hoping for the best, people have done exactly what you are saying. There have been many efforts over the years to create better lives for all of us. To suggest otherwise is a slap in the face. Nobody is sugar-coating anything. By all means, if you want to be miserable then be miserable, just don't do it here. Currently, there is a reality, which is until people start giving a shit about HPPD, and recognizing it as real, there truly isn't much that could be done other than to learn how to live with it, and to support each other through tough times. You keep assigning people blame for not doing more to help HPPD. What have you done? Oh yeah, that's right, nothing. Until you stop this crap this is the last time I'm speaking with you like you're an adult. I don't regret insulting you, you deserved it. Link to comment Share on other sites More sharing options...
Siren001 Posted October 14, 2023 Report Share Posted October 14, 2023 I’ve been around since the stormloader days and after nodid vanished, I did everything. It’s a thankless job but I don’t want thanks. I want a cure. www.neurogroup.org i expect to be booted now… Link to comment Share on other sites More sharing options...
Jay1 Posted October 15, 2023 Author Report Share Posted October 15, 2023 You seem to be someone who can't listen/read. Only hope is not a solution, sure... people on here do way more than that though.. and you know this... You are just pissed because your own "hope", the australian research, didn't hit it's targets. Chill the fuck out, learn to communicate properly and you will go so much further getting support. 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 15, 2023 Report Share Posted October 15, 2023 (edited) Advice from the unlicensed psychologist? No thanks… Your approach offers absolutely no help. Edited October 15, 2023 by Siren001 2 Link to comment Share on other sites More sharing options...
Jay1 Posted October 15, 2023 Author Report Share Posted October 15, 2023 Yea, so sorry... Your way is working amazingly... I bet you've helped sign up £100,000s in research grants using the patented cunt approach. 2 Link to comment Share on other sites More sharing options...
Siren001 Posted October 15, 2023 Report Share Posted October 15, 2023 (edited) But a study came out of it and even though that was managed, all this board does is neglect it. Instead of complaining and playing therapist maybe you should help. Unless you enjoy doing what you do and would things to stay this way until the day you die then I perfectly understand. Edited October 16, 2023 by Siren001 Link to comment Share on other sites More sharing options...
Siren001 Posted October 15, 2023 Report Share Posted October 15, 2023 What a wasted opportunity… 1 Link to comment Share on other sites More sharing options...
Jay1 Posted October 16, 2023 Author Report Share Posted October 16, 2023 You can't neglect something you don't know about. Make a post about it and just speak to people in a respectful manner, it's very simple. Just understand there are about 30-50 active users on here, so don't expect the world to change. 1 Link to comment Share on other sites More sharing options...
Spartan Posted October 16, 2023 Report Share Posted October 16, 2023 (edited) . Edited October 16, 2023 by Spartan 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 16, 2023 Report Share Posted October 16, 2023 5 hours ago, Jay1 said: You can't neglect something you don't know about. Make a post about it and just speak to people in a respectful manner, it's very simple. Just understand there are about 30-50 active users on here, so don't expect the world to change. Well then that’s 30-50 people that can help find a professional fundraiser or something constructive that can help. I don’t have all the answers but I at least tried to do something! Link to comment Share on other sites More sharing options...
Jay1 Posted October 16, 2023 Author Report Share Posted October 16, 2023 1 hour ago, Siren001 said: Well then that’s 30-50 people that can help find a professional fundraiser or something constructive that can help. I don’t have all the answers but I at least tried to do something! You haven't tried to do anything here... You came on, bad mouthed people for not doing one very specific thing, yet did nothing yourself... Posted no articles, no links to fundraisers, no mention of what you are doing that might inspire people. Rethink your approach and channel your energy in the right way and things might happen. 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 16, 2023 Report Share Posted October 16, 2023 1 hour ago, Jay1 said: You haven't tried to do anything here... You came on, bad mouthed people for not doing one very specific thing, yet did nothing yourself... Posted no articles, no links to fundraisers, no mention of what you are doing that might inspire people. Rethink your approach and channel your energy in the right way and things might happen. A go fund me link was posted. You were tasked to send a massive email blast for it. Link to comment Share on other sites More sharing options...
Siren001 Posted October 16, 2023 Report Share Posted October 16, 2023 (edited) Because that didn’t happen, this was posted in case people didn’t think the NRF was legit, they could send money directly to the university. Edited October 16, 2023 by Siren001 Link to comment Share on other sites More sharing options...
Siren001 Posted October 16, 2023 Report Share Posted October 16, 2023 (edited) I’m not trying to fight. I just want us to have a chance. A chance at fully understanding this condition that way we can get help…. Thats what I’ve always wanted. I’m sorry if I don’t come across ok but I’m not ok. I have moderate to severe HPPD and I’m desperately trying to get this condition the attention it deserves. I was kicked out of the Reddit group by the moderator Sophia Pony for soliciting donations. That group has over 10,000 HPPDers on it. I just, I don’t know what to do. 25 years ago when I first got HPPD, news of the MacQuarie protocol would’ve been a fucking miracle to me. Why it isn’t a miracle to anybody else seems completely bizarre. MAKE IT MAKE SENSE!!! Edited October 16, 2023 by Siren001 1 Link to comment Share on other sites More sharing options...
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