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I find that when I am looking through the forum to find things (drugs, therapies, etc), I get confused and turned around. My point being that, although a forum is great for collaboration and discussion, it is less than ideal for storing information, treatments, and theories we develop.

I think it is very important we have an archive for all of the drugs trialled, what our experience was, what we were hoping to treat, how long we tried it for. From there we can generate some valuable data that is otherwise lost in the forum.


Is there a place that exists for things like this? If not, would anyone be interested in developing something like this? An archive of sorts.


It could go beyond the scope of hppd, and encompass people from other disorders as well. A place to search by disorder, or drug or treatment, and come up with relevant results and data.


Just a thought. I'd be interested in collaborating on something like this. I am currently doing my last year in software development.

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A few of us are working on surveys, this would look to record this kind of data, but I suppose what you're talking about is more detailed though, like the Erowid trip reports? Something like that would be good... !

I want to put that information in a relational database. So that someone can search: hppd; treatment; drugs; order by effectiveness

and it would return what people with hppd have found to be the most useful drug. Along with it's side effects, length of trial, and as much data as we have.

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The surverys sound like a good idea. if tons of questions are added on it, i think it can be easier than compiling the data we already have. 

But I dont think there's much to compile to determine relationships. I think there are way too many variables at play to compile that sort of data. 

The uniqueness of our hppd alone is overwhelming and random. Add that with factors like sleep, stress, supplements, exercise, diet, etc. 

To be realist, every one of our theories, treatment can and should end with "however, this may not work for you"

Just by looking at some of the polls from the forum, many of the results are 50/50. 

And the ones that 'work' and have good potential have already been read and in everyone's knowledge bucket. (ex/ benzo, magnesium, tramadol, etc etc) 


nonetheless, i would love to see the survey!

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This is precisely why I want to create the database. Right now, it all seems random, and I agree there are so many variables. But, if we can organize the data and account for as many variables as possible we might be able to establish trends and patterns.


Say someone starts a drug:

-they fill out how long they have had hppd, cause etc

-what drug and dose

-symptoms prior

-symptoms during

-symptoms after

-length of treatment

-rate the apparent effectiveness

- have questions for general sleep diet etc and then move on


If we had a signigicant number of people filling out a streamlined version of this we might actually have some figures to back-up our claims (albeit not perfect) but figures all the same. We may be able to surprise ourselves and find some trend(s) that we hadn't uncovered until we compiled the datas.


It might just be how I see it, but I see millions of people in the mental health communities trying different approaches everyday, some get cured some don't. But none of that information is being stored. It's a waste.

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