Siren001

11 hours ago, Fawkinchit said:

Yes, but it’s progress, a lot of progress actually, and it’s better than just going around trying to convince people that what they are doing to help is not helpful.

This thread is more about validating how brilliant you are.

And nothing else.

6 hours ago, Fawkinchit said:

Yes, but its progress, a lot of progress actually, and its better than just going around trying to convince people that what they are doing to help is not helpful.

How is it progress?

just a bunch of desperate people rationalizing what the problem is without any scope of Turing a theory into reality. 

This post first appeared in 2012.

you want to know how many of these theories have been researched tested and proven?

That would be none of them…

Nah bro, the ENTIRE POINT flew way the fuck over your head. Get a clue. 

On 10/24/2023 at 3:08 PM, AF44 said:

Siren001,

This is the first time I have read your posts and they literally make no sense to me. Like word salad. What are you even talking about? Also, stop being rude because it just makes you look like an idiot.

 

Fuck Off…

https://www.neuronatherapeutics.com

Too many connections? Ask him for a link to a citation that way we can all see it. 

Imagine sleeping is already a challenge then getting older and going to the bathroom several times a night. I keep saying getting older with HPPD is horrible but there’s no sense of urgency to do anything about it. 

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!!!

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.

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. 

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!

What a wasted opportunity…

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.

Advice from the unlicensed psychologist?

No

thanks…

Your approach offers absolutely no help.

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…

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….

Pretty much feel this is the overriding message of the OP. 

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

On 10/10/2023 at 9:37 PM, SomebodySomewhere said:

I think the idea of DP/DR being a PTSD type of response is correct, especially given the non-HPPD association between DP/DR and PTSD.

The only opinion that matters is an expert opinion. 
 

Don’t limit yourselves to just accept this shit. Demand research. Fight for a cure…

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.

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. 

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. 

You just gave me an idea…

It’s funny you say that, I received a PM from a registered nurse who underwent Ketamine or MDMA therapy to help in dealing with the grief she experienced after the loss of her mother that found a post of mine on FB with a hash tag on mind mend and HPPD because after getting therapy, she got HPPD.

They refunded her and ceased contact.