Where is the "community"?

[isness]

Who ever is running the show on reddit/discord right now is telling people HPPD is in our heads. This can push away researchers. It's already so hard for people to take HPPD seriously. Also supposedly a new rule on the subreddit: no talking about any drugs except clonidine, keppra, lamictal, and tolcapone. This is to prevent kids from hearing about benzos or other drugs w a few anecdotes and trying them which might worsen their symptoms. So many rules these days. 

This is the complete opposite of what it used to be like, here.. I miss the old days when we would take every anecdote seriously and explore it.. research it.. Someone came through the subreddit and said they took Xenazine (tereabenazine) and it cured them instantly. Id love to explore that. Does anyone know why something like that might happen? Less dopamine = more GABA?  

Is there an active discord for this message board? I want to fix this community. I think reddit is not doing a good job and funneling this energy. We have all these people with HPPD coming through and they are being so misguided. Can we direct people here? 

tolcapone study-
what happened with this? Whats the leading theory on HPPD pathology these days? Is it mTOR or COMT related? Its an over active thalamus? Someone please bring me up to speed. 

Edited February 11, 2023 by isness

[SomebodySomewhere]

Hi,

These days everyone is on Reddit for better or for worse. Old fashioned message boards like this are on the decline.

I and others I've talked to have had awful experiences with the r/HPPD subreddit. Lots of idiots there that have no clue what they're talking about.

I don't know how much reddit Karma is needed to create a new subreddit, but if enough people like this response I'll see about creating an alternative to r/HPPD on reddit.

When I went through an old USB drive I found the database of HPPD articles I had helped organize for David Kozin years ago. With his permission I would post all of those articles as knowledge is power. @David S. Kozin May I have your permission? The last time we spoke I was a drunken/high/abusive prick so I don't blame you if you tell me no, I just hope you're doing well buddy, sincerely.

[isness]

On 2/11/2023 at 10:12 AM, isness said:

reddit/discord right now is telling people HPPD is in our heads. This can push away researchers. It's already so hard for people to take HPPD seriously. Also supposedly a new rule on the subreddit: no talking about any drugs except clonidine, kepp

i think a subreddit dedicated to figuring out the pathology would be ideal.