Spartan Posted July 31 Report Share Posted July 31 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... Link to comment Share on other sites More sharing options...
brake Posted July 31 Report Share Posted July 31 (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 by brake Link to comment Share on other sites More sharing options...
firehawk Posted August 1 Report Share Posted August 1 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 Link to comment Share on other sites More sharing options...
Spartan Posted August 1 Author Report Share Posted August 1 (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 by Spartan Link to comment Share on other sites More sharing options...
Jay1 Posted August 1 Report Share Posted August 1 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 Link to comment Share on other sites More sharing options...
Spartan Posted August 1 Author Report Share Posted August 1 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..!! Link to comment Share on other sites More sharing options...
Jay1 Posted August 1 Report Share Posted August 1 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. Link to comment Share on other sites More sharing options...
Fawkinchit Posted August 2 Report Share Posted August 2 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 Report Share Posted August 2 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. 4 Link to comment Share on other sites More sharing options...
brake Posted August 3 Report Share Posted August 3 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...
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