Spartan Posted July 31, 2023 Report Share Posted July 31, 2023 I find it pretty hard to believe that we are all still here after decades upon decades... Very unfortunately still with the same extreme hppd. I remember back in the storm loader days.. Who would have thought there was such a thing called hppd triggered by LSD that would endure for decades upon decades.. Fuck×^n insane unbelievable... 1 Link to comment Share on other sites More sharing options...
brake Posted July 31, 2023 Report Share Posted July 31, 2023 (edited) Yeah dude after 10 years of different diets and therapies and meds.... the other day the floor was still moving and warping. I haven't even seen a psychedelic since onset. Edited July 31, 2023 by brake Link to comment Share on other sites More sharing options...
firehawk Posted August 1, 2023 Report Share Posted August 1, 2023 Yeah shits crazy. crazy we all got a super rare condition and we’re all spread out over the world all connected. I admire ya’ll for pushing through and fighting for this long your fuckin awesome. I can deal with my vision cause i dont have any floaters or afterimages or other things all I can see is the world through a pair of clear goggles and slight motion blur its so odd. havent seen anyone else with my symptoms or vision. my visual snow getting so bad though. ive been fully sober and my symptoms and vision has slowly gotten worse and worse and I dont even worry about it for some reason. I honesltly have no ideas why just riding it out. maybe its cause i was smoking weed every day before and after onset and since I quit everthing my mind doesnt know what its supposed to do. anyways thanks for the rant if anyone has any suggestions let me know. keep on fightin and living happy lives 1 Link to comment Share on other sites More sharing options...
Spartan Posted August 1, 2023 Author Report Share Posted August 1, 2023 (edited) Yeah it's some fucki*Ng brutal shi* It's so tough.. It's very sad... Like I was reading about certain disorders and which ones create the most sistress... anguish etc. I would say hppd being chronic , acute and constant would have to be well up there.. though not so many people know about it. After all this time seriously feel my symptoms are at an all time high... Wtf... Hmmp Something really needs to happen.. We need help Edited August 1, 2023 by Spartan 1 Link to comment Share on other sites More sharing options...
Jay1 Posted August 1, 2023 Report Share Posted August 1, 2023 Hopefully gene editing will be our salvation.... Maybe AI can help with these more niche illnesses. I'm trying to arrange a qEEG in the next few months, so hopefully that will show something. 1 2 Link to comment Share on other sites More sharing options...
Spartan Posted August 1, 2023 Author Report Share Posted August 1, 2023 Let's hope so or plan for it.. Really seriously hope something happens soon. Like to deal with a chronic affliction for decades with nothing is severe. All we want is some help or treatment. It was planned for me to be first in clinical study approx 1 year ago tho funding supposedly fell through. That's exciting for the qEEG, congrats..!! 1 Link to comment Share on other sites More sharing options...
Jay1 Posted August 1, 2023 Report Share Posted August 1, 2023 Yea, it's shit that there is so little research... My hope is that it seems to be connected to anxiety somewhat, which is clearly a huge issue and well funded... A break through in anxiety might be a breakthrough for us too. 1 Link to comment Share on other sites More sharing options...
Fawkinchit Posted August 2, 2023 Report Share Posted August 2, 2023 8 hours ago, Jay1 said: Yea, it's shit that there is so little research... My hope is that it seems to be connected to anxiety somewhat, which is clearly a huge issue and well funded... A break through in anxiety might be a breakthrough for us too. Interestingly enough I was talking to a researcher one day that was explaining that anxiety is synonymous with neuronal inflammation. Link to comment Share on other sites More sharing options...
Naldarrin Posted August 2, 2023 Report Share Posted August 2, 2023 gotta say though, after dealing with this for 27 years and thinking i was all alone, its kinda uplifting to know that you guys have ups and downs with it too. been dealing with the worst symptoms have been in 7 years...the cycles come and go, kinda like having to ride out the waves in a storm. But seeing your lights out there too, going through the same storm...what we have is rare and not very well understood, but we arent alone in this. Raise your heads folks, you've made a difference in My life. 5 Link to comment Share on other sites More sharing options...
brake Posted August 3, 2023 Report Share Posted August 3, 2023 7 hours ago, Naldarrin said: gotta say though, after dealing with this for 27 years and thinking i was all alone, its kinda uplifting to know that you guys have ups and downs with it too. been dealing with the worst symptoms have been in 7 years...the cycles come and go, kinda like having to ride out the waves in a storm. But seeing your lights out there too, going through the same storm...what we have is rare and not very well understood, but we arent alone in this. Raise your heads folks, you've made a difference in My life. This post has touched my heart. Honestly I felt way better knowing that there are official articles about this disorder and many people on this forum. 3 Link to comment Share on other sites More sharing options...
Siren001 Posted October 3, 2023 Report Share Posted October 3, 2023 No, this is bullshit. We need this cured. Accepting it and going through the ups and downs torturous rollercoaster of HPPD for a lifetime is insanity. This condition, disease, whatever the hell it is must be front page news. It has to be on the radar of every researcher working with psychedelics and neurologists who specialize with substance abuse disorders. There’s nothing warm and fuzzy about this post! It’s a cry for help! How did it turn into some Kumbaya group HPPD hug?! 1 Link to comment Share on other sites More sharing options...
Naldarrin Posted October 4, 2023 Report Share Posted October 4, 2023 A cure would be incredible. However, I am no groundbreaking scientist. Im not one of the famous heads in cyberspace or meatspace. I'm a guy who is trying to make the best out of Mr. Toad's Wild Ride. I have no cures to offer, or great things that have helped me in life. I have no way to further research into this. All I can offer is words of encouragement, words I never got. I've spent most of my life living with this and feeling isolated and cut off. I may not be able to provide a cure or medically help, but please remember sometimes someone can be hurting and just need the Kumbaya group hug. I know theres a lot of dark times in my life where just a voice saying they understood would have been like water in the desert. So, yes...raise awareness, make people understand. Yet, dont forget each other. especially in places like this. We have all had a harder road, shouldnt we above all others be concerned with each other's ups and downs? Those of us here have something others dont...an actual frame of reference. In 27 years, i've never met someone else who suffered from this. Yet, here we are...able to connect and talk with others who understand. All I'm saying is that if your lives are as difficult as mine....i think we deserve to hear some warm fuzzy from time to time. 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 12, 2023 Report Share Posted October 12, 2023 No. This is the way and I’m amazed how little support it’s gotten from us: https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo Link to comment Share on other sites More sharing options...
AF44 Posted November 26, 2023 Report Share Posted November 26, 2023 On 8/1/2023 at 12:55 AM, Jay1 said: Hopefully gene editing will be our salvation.... Maybe AI can help with these more niche illnesses. I'm trying to arrange a qEEG in the next few months, so hopefully that will show something. I’ve heard of qEEG. How does it differ from a regular EEG? I guess what I’m trying to ask is how a qEEG can show something different? Does it show that we have HPPD? I worded that stupidly but hope I’m making some kind of sense 1 Link to comment Share on other sites More sharing options...
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