Defsync official rant #1 <-- listen

[Defsync]

Hi guys.

I may not interact here a lot, but doesnt mean shiz aint rolling thru my head on POIS.

couple things:

1) the notion that POIS could be caused by interaction between fluids and urethra is impossible. Heres why: you have sexy dream. get an erection. your shaft filles with fluid and semen that sits there all night long (yes, your body releases small amounts to lubricate the shaft). If it was a urethra thing, you'd have super POIS by morning just by the fluids being present in said tube. So lets stop with that notion.

2) you want society to recognize you? look at social media and how it works. We need a properly done video, showing real people, showing how POIS affects out lives. Like, "going into work the next day and have a hard time doing your job (and explaining why), or "why our brains switch off after sex and how that affects a relationship (and explaining why)". WE DONT HAVE THAT. $30k for research is great, but ah, how fast would $ come if say we could put POIS into context where the average person would be like "holy shiz! it does THAT?". I almost proposed us shooting some kind of video when we're at Rutgers getting the study done, but Im not gonna be there.

3) Seroquel. It is prescribed offlabel for sleep. It drops your dopamine down. I can tell you, I have realized, that this definitely helps in lowering your libido, ie, helping you to not have emissions at night from sexy dreams. MUCH more help than my previous method of just using a muscle relaxer. HOWEVER, Seroquel will also SLOW YOUR BRAIN DOWN for the rest of the day, after you wake up. So much that you may have a lot of confusion at complex tasks, ie, tasks that might be required for work or school.

4) nobody has posted test results from neurochemical tests, like the kind that measure how much dopamine, seratonin, and norepinephrine are present BEFORE and AFTER an orgasm. THESE TESTS ARE UNDER 200$ AND NOBODY HAS USED IT. This really makes me question how dedicated you people are to finding answers. (i am not dedicated, i just live with this shit and find solutions to overcome its adversities, ie, my dream control method)

5) YOU CAN GO FOREVER WITHOUT HAVING A NOCTURNAL EMISSION. It is actually not that hard. If you need help, post questions in this thread and I will answer.

And probably my last rant too. Got what I needed to get off my chest. Have a great day =)

[Nightingale]

#1 - totally agree

#2 - whew you know I've thought about it too. Most success so far was on reddit.com in my opinion. This would take collaboration, and that's been difficult to achieve. I just thought of an idea that would probably be easier than Skype (no need to add friends and such): Teamspeak.  I used this a lot back when I used to play collaborative video games, and the nice thing is is that it would be an "always on" server where you could just log in and chat (voice only I believe, which is still great). If no one is on, you could just stay logged in until someone else joined, or you could say you'll be logged in at a certain time. We could rent a server for cheap, or someone could host it on their own.

#3 - I've been on Seroquel for 6 years. I know it up and down inside and out. I would be psychotic without it, and one of the "handy" side effects is that it's very sedating. If you need sleep, Seroquel will get it for you.

#4 - =/ It's not easy in a poorer area like where I live. Not a fan of this, we're not going to figure out what the results really mean without a researcher who costs more $$

#5 - I've had one nocturnal emission in my entire life. Weird.

[Outsider]

Don't thinck seroquel is a good idea ....
and the side effects from this kind of molecule are tough

[demografx]

4) nobody has posted test results from neurochemical tests, like the kind that measure how much dopamine, seratonin, and norepinephrine are present BEFORE and AFTER an orgasm. THESE TESTS ARE UNDER 200$ AND NOBODY HAS USED IT. This really makes me question how dedicated you people are to finding answers. (i am not dedicated, i just live with this shit and find solutions to overcome its adversities, ie, my dream control method)

I disagree strongly, Defsync, with the implication that this is not a dedicated group!

I asked my highly regarded university endocrinologist about those tests and he said they're unreliable. Whose advice will I follow?

[Stef]

"2) you want society to recognize you? look at social media and how it works. We need a properly done video, showing real people, showing how POIS affects out lives. Like, "going into work the next day and have a hard time doing your job (and explaining why), or "why our brains switch off after sex and how that affects a relationship (and explaining why)". WE DONT HAVE THAT. $30k for research is great, but ah, how fast would $ come if say we could put POIS into context where the average person would be like "holy shiz! it does THAT?". I almost proposed us shooting some kind of video when we're at Rutgers getting the study done, but Im not gonna be there."

Defsync,

For what it's worth, I think your idea of a video focused on the Rutgers study (documentary-style), where one or two participants would be interviewed about the effects of POIS on one's life and the need for solid scientific studies -- is a GREAT idea!

It would require Dr. K's approval and input, first and foremost. There may be very good and important reasons why he wouldn't want to publicize this study -- at this early juncture.

But I think you're on the right track, Defsync. :-) 

FYI -- there are film students (for example, at the Tisch School of Cinema Studies at NYU) who might jump at the chance to do a serious documentary video about POIS -- for free.  They generally need to produce at least one short, serious film as a requirement for graduation.  They also often submit their films to prestigious film competitions.

It's just something for the forum members to think about, if not for now then for a future (not so distant) project. Personally, I like your idea!

Stef

[G-man]

#1 Really? When you have an erection, your penis fills up with blood. Semen sits in the PROSTATE until ejaculation occurs. During ejaculation, semen flows from the prostate into the urethra. Pre-ejaculatory fluid comes from the Cowper's glands, and the composition of semen and pre-ejaculatory fluid is significantly different.

#3 While I am not claiming it is a bad idea for other people to take it, I was prescribed off label seroquel for sleep and it caused me to become delusional. Getting off it was hell because, for two months, I did not make it longer than four days without having a nocturnal emission.

[vetrofragile79]

THESE TESTS ARE UNDER 200$ AND NOBODY HAS USED IT.


What are the names of these tests ? where tests are conducted ?

[Colm]

"2) you want society to recognize you? look at social media and how it works. We need a properly done video, showing real people, showing how POIS affects out lives. Like, "going into work the next day and have a hard time doing your job (and explaining why), or "why our brains switch off after sex and how that affects a relationship (and explaining why)". WE DONT HAVE THAT. $30k for research is great, but ah, how fast would $ come if say we could put POIS into context where the average person would be like "holy shiz! it does THAT?". I almost proposed us shooting some kind of video when we're at Rutgers getting the study done, but Im not gonna be there."

Defsync,

For what it's worth, I think your idea of a video focused on the Rutgers study (documentary-style), where one or two participants would be interviewed about the effects of POIS on one's life and the need for solid scientific studies -- is a GREAT idea!

It would require Dr. K's approval and input, first and foremost. There may be very good and important reasons why he wouldn't want to publicize this study -- at this early juncture.

But I think you're on the right track, Defsync. :-) 

FYI -- there are film students (for example, at the Tisch School of Cinema Studies at NYU) who might jump at the chance to do a serious documentary video about POIS -- for free.  They generally need to produce at least one short, serious film as a requirement for graduation.  They also often submit their films to prestigious film competitions.

It's just something for the forum members to think about, if not for now then for a future (not so distant) project. Personally, I like your idea!

Stef

Thanks Stef, Nightingale, Defsync and all.

I would also feel strongly that a professional social media campaign, if done correctly, could go viral in an empathetic male community who would definitely relate to what their lives would be like if they couldn't engage in relationships with a normal and healthy component, sex. I think they would want to support research and a cure. You could likely raise a large amount of small donations.

The BIG problem we seem to have faced forever, is a lack of funds, which leaves us a virtual group of individuals who are dependent on a small research funded project. As a group of virtual and geographically dispersed individuals we can't bring any influence to bear over the research.

What we also understandably lack is the funds and ability to have someone lead activities that will speed up the research. We are reliant on the leadership that would come from the researchers. Hence, it takes us weeks to even have a form that we can collectively contribute some valid data. That is NOT a criticism of anyone's efforts here at all. Just very difficult to agree a process on a virtual community.

Of course, while extremely well intentioned, the research group (without larger funds) can't escalate our little project, as money and resources also speaks.

Bear in mind there are likely thousands of guys out there who suffer from POIS now, and who have had it for decades, who don't know anything about the forums or that this is a real condition.

Stefs ideas about a social media campaign leveraged from the work of the Rutgers group would be excellent. But it would require someone to lead it and develop a small team with enough professionalism and digital marketing knowledge to make it viral and ensure any monies raised would be financially controlled, audited and accounted for in to further research.

[Nightingale]

The creative power to get this done exists. It's here in the community. We need another medium to augment this forum so that collaboration can occur. I'm thinking more and more about how we can establish our own voice-chat server. Skype is not made for what this would require. Teamspeak or Ventrillo is software that could achieve this for us.

[Stef]

Re: production of a serious video about POIS -- take a look at this -- https://vimeo.com/101768405. 

It's a wonderful short film about an Australian man with a very rare disorder called, "Stiff Person Syndrome."  Shane James was bed-ridden, having spasms that were so severe that they actually caused fractures in his spine. There's no treatment, aside from muscle relaxants -- that don't always work and can cause miserable side-effects.

Shane decided to take up running! He ran, literally, a few steps at a time, fighting through severe pain and muscle spasms. It turned out to be his best (and only) successful medication.

A film student from the University of Southern California, Nic Weinfeld, learned about Shane, became very interested in his story, and contacted him. Nic decided he wanted to do his senior film project about him.

Shane said yes, and the film was made -- for free. Nic then submitted it to several film competitions and it won "Best Documentary" at the Dot Independent Film Festival in Los Angeles (a major student film festival). It was also a finalist in other well-known film competitions.

Most importantly -- through Shane, Nic was able to bring awareness to the world about the very rare disorder, Stiff Person Syndrome. This video has appeared on Face Book and Twitter numerous times.

(I've met both Shane and Nic -- so can't help but refer to them each by first names.)

The same thing could happen with POIS. It would take an eager young film student who's seeking a senior project...and a few of you to be willing to make the contact and go public with your stories.

It wouldn't be easy, but it's definitely possible.

As a post script, Shane has become an Ultra-Marathoner. He runs through the pain. Running gave him back his mobility -- hence, the title of the film -- "Run to Live."

Stef

[G-man]

The creative power to get this done exists. It's here in the community. We need another medium to augment this forum so that collaboration can occur. I'm thinking more and more about how we can establish our own voice-chat server. Skype is not made for what this would require. Teamspeak or Ventrillo is software that could achieve this for us.

Jitsi is a free and open source multiplatform voice (VoIP), videoconferencing and instant messaging application
https://jitsi.org/

[Colm]

Re: production of a serious video about POIS -- take a look at this -- https://vimeo.com/101768405. 

It's a wonderful short film about an Australian man with a very rare disorder called, "Stiff Person Syndrome."  Shane James was bed-ridden, having spasms that were so severe that they actually caused fractures in his spine. There's no treatment, aside from muscle relaxants -- that don't always work and can cause miserable side-effects.

Great really professional video and thanks for sharing that Stef. It isn't too hard to imagine the potential for a finished product, if we got the right team together to create, develop and bring it all together. Obviously mobilising resources and navigating the project virtually would be a big challenge.

Your own piece on the video (while with NORD), added a lot to the production and message.

Hopefully a young and hungry group from the forum could engage with this at some appropriate time in parallel or after the research project. Who knows. Hopefully a few thoughts might emanate from the elder statesmen here and gents grounded in reality, as to what we could or should do?

Maybe the virtual meeting of a few people to discuss might be best in the initial phase to explore feasibility.

[Stef]

Re: production of a serious video about POIS -- take a look at this -- https://vimeo.com/101768405. 

It's a wonderful short film about an Australian man with a very rare disorder called, "Stiff Person Syndrome."  Shane James was bed-ridden, having spasms that were so severe that they actually caused fractures in his spine. There's no treatment, aside from muscle relaxants -- that don't always work and can cause miserable side-effects.

Great really professional video and thanks for sharing that Stef. It isn't too hard to imagine the potential for a finished product, if we got the right team together to create, develop and bring it all together. Obviously mobilising resources and navigating the project virtually would be a big challenge.

Your own piece on the video (while with NORD), added a lot to the production and message.

Hopefully a young and hungry group from the forum could engage with this at some appropriate time in parallel or after the research project. Who knows. Hopefully a few thoughts might emanate from the elder statesmen here and gents grounded in reality, as to what we could or should do?

Maybe the virtual meeting of a few people to discuss might be best in the initial phase to explore feasibility.

Hi Colm (and Everyone) --

The virtual meeting might be a great place for a bunch of you to start brain-storming about this. As I see it, all you'd need are: (1) a few of you with willingness to speak publicly about life with POIS; (2) a few online searches of university-affiliated film schools -- where the students are looking for interesting, unique human-interest stories;  and (3) one or a few of you to contact the film schools and pitch the POIS story.

The work would be done by the student(s). They'd provide the ideas, the creativity, the direction -- and they would come to you to do the filming (not the other way around).

(For this film, Nic Weinberg flew out, on his own money, from California to CT to interview/film me one morning at NORD. (I know Shane well -- have met him several times while at NORD but more so since leaving). Then Nic drove to the University of Pennsylvania the same day to interview/film the Stiff Person Syndrome (SPS) researcher, Dr. Eric Lancaster (he'd been awarded a grant from NORD for SPS). Both interviews/filming were accomplished on the same day.

Then he drove to NYC (same day) where his parents live -- and flew back to California a few days later to continue work on the film... editing it -- and finishing it.

The editing and all other things that go in to a serious short film would be the student's responsibility. The "work" would all be done by the film students, including putting it out there for the public, submitting it to film competitions, etc.

You don't need anyone from NORD, or me, to make this a success. If Dr. K and/or Dr. Wise were willing to be interviewed, that would be more than enough.  Dr. K, in particular, is a really engaging speaker and would be a terrific "expert" -- if he'd be willing to participate.

Just something for you all to think about.

Stef

[Defsync]

I think a scripted set of "POIS affected life stories" would be best. ASking /asnwering questions is fine, as long as its fuel for what i just mentioned. Showing a bunch of us answering questions has very little dramatical (yes i made that word up) effect on the viewer.

some example stories i might include (from my own personal experiences):

1) soldier almost gets fellow soldiers killed after night of sex, due to POIS induced cognitive failure on the battlefield
2) loses promotion / temp job at work after couple days of sex with new gf, due to ""
3) runs red light and almost gets creamed by a cement truck after working long shift and having orgasm from sex with gf, due to "
4) told by doctor "its in your head" or "its just hormones" countless times