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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6425237 times)

Offline Habibou

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« Reply #13525 on: 05/06/2011 10:52:13 »
How many POIS suffers subscribed to the NSF yet, exactly? It can go very fast if everybody get involved in it. Unfortunately, it seems like some suffers don't often write or read posts...
we are 76 on the new forum which is still far from the 200+ suffers.
 

Offline daveman

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« Reply #13526 on: 05/06/2011 14:02:40 »
Quote for emphasis, Thank you B_Daniel.

Also note, as long as we are continually puting something, which even our lovely and generous Stefanie said she would do, the fund will NOT be transfered.

We just HAVE to commit in our hearts to the $33,500, and that is not as much as it sounds for so many who suffer on a daily basis (many since puberty!!) What's more those very expired funds, can go to top of others that are seen to have desire (getting close with continual but slow progress)


Animus - good question - this is detailed on the NORD website. 

"If the total of donated funds for research on a specific disease is less than $1,000 after two years without significant donations, the fund will be transferred to general research and related activities.
If the total of donated funds for research on a specific disease is more than $1,000 but less than $5,000 after four years, the money will be transferred to research on related diseases."

The website goes on like this, defining different hurdle amounts and specifying the length of time which the donations are valid before they are contributed to another activity.  Also, exceptions can be made if NORD sees continued donor activity for a specific disease, indicating that there is a determined effort to reach the minimum $33,500 goal.

I can't say how long it will take us, but I am very confident we will reach the $33.5K.  I just hope we meet it sooner than later!  My donation is forthcoming.

 

Offline Starsky

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« Reply #13527 on: 05/06/2011 14:17:42 »
Is it worth to start taking Cipramil/Celexa to stop the nocturnal emissions?
 

Offline daveman

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« Reply #13528 on: 05/06/2011 15:48:19 »
Is it worth to start taking Cipramil/Celexa to stop the nocturnal emissions?

I tried a google search for these substances on this forum, but didn't find much. Although I never have much luck with the searches for NSF.

Anybody?
 

Offline demografx

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« Reply #13529 on: 05/06/2011 15:58:58 »
I took Celexa. My experience is that antidepressants can slow us down sexually, but not enough to stop NE's.

The only thing that finally stopped my NE's - and their vicious POIS episodes - was.....aging!

I call an NE POIS episode  vicious because a seemingly harmless simple nocturnal physical release for me was just as horrendously POIS-inducing - and just as long-lasting - as a real-life full-blown sexual activity!
« Last Edit: 05/06/2011 19:28:55 by demografx »
 

Offline demografx

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« Reply #13530 on: 05/06/2011 16:07:46 »

Animus - good question - this is detailed on the NORD website. 

"If the total of donated funds for research on a specific disease is less than $1,000 after two years without significant donations, the fund will be transferred to general research and related activities.
If the total of donated funds for research on a specific disease is more than $1,000 but less than $5,000 after four years, the money will be transferred to research on related diseases."

The website goes on like this, defining different hurdle amounts and specifying the length of time which the donations are valid before they are contributed to another activity.  Also, exceptions can be made if NORD sees continued donor activity for a specific disease, indicating that there is a determined effort to reach the minimum $33,500 goal.

I can't say how long it will take us, but I am very confident we will reach the $33.5K.  I just hope we meet it sooner than later!
  My donation is forthcoming.



B_Daniel, thank you again!!
« Last Edit: 06/06/2011 20:34:12 by demografx »
 

Offline demografx

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« Reply #13531 on: 05/06/2011 19:34:30 »




I just made a $100 donation on the NORD website to the POIS fund!


Animus, thank you !!


« Last Edit: 05/06/2011 19:43:33 by demografx »
 

Offline demografx

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« Reply #13532 on: 05/06/2011 19:35:14 »
« Last Edit: 06/06/2011 20:12:35 by demografx »
 

Offline B_Daniel

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« Reply #13533 on: 05/06/2011 21:13:58 »
Is there a way to PM every member at once?  Once we have enough money in the fund to show others how dedicated we are, we should consider a mass PM.  If not, perhaps 10 of us can each take 20-30 names and send ppl notes.  There have got to be others who'd like to contribute, but who are just unaware of our current fundraising efforts.
 

Offline demografx

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« Reply #13534 on: 05/06/2011 21:25:45 »
B_Daniel, here at NSF, not easily. That's why we keep posting "reminders."

PM's can be sent 5 (max) at a time. (Plus another 5 in bcc: form).

The only way we've done "PM mass-mailings" in the past is to go back through the posts and write to the most frequent posters. But even that would miss the "silent readers", many of whom are not even registered but could conceivably donate.

But I think we're getting good exposure by posting on the two forums.

Excellent idea, B_Daniel!

Any volunteers here who can compile our list?
 

Offline Vandemolen3

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« Reply #13535 on: 05/06/2011 22:25:15 »
So if I understand it right this is the best way to send money to NORD from outside the US:
Put dollars in an envelope and send it through the post to NORD? But there is a change that the envelope doesn't reach NORD.
 

Offline Counterpoints

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« Reply #13536 on: 06/06/2011 00:25:49 »
Ladies and Gentlemen,
...

Pharaoh...  I think your low testosterone could be caused by a pituitary adenoma.  I recently read a case similar to yours, where this was the cause.  Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good).  Have you ever had trouble with managing your weight?  This could be relevant.

I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases.  They can affect cortisol, testosterone, sexual function....
« Last Edit: 06/06/2011 00:33:27 by Counterpoints »
 

Offline Stef

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« Reply #13537 on: 06/06/2011 00:28:35 »
Hi Vandemolen3,

I have finally taken the giant leap and registered with this forum!

No, please don't send dollars in the mail to NORD.

You can send a Postal Money Order, which is paid for in cash at your post office. It's like a bank check. That money order is what you would mail--NOT DOLLARS.

(I can't imagine how difficult it is to be trying to translate our English into another language!)

Tomorrow (Monday) I will ask our accounting department exactly how we accept international donations.  I'll post the information that I obtain tomorrow.

As an aside, I can't believe what all of you are doing here!!! What a GREAT group!!! There is no question that you will meet your goal and finally start getting some answers about this miserable condition.
 

Offline Habibou

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« Reply #13538 on: 06/06/2011 00:33:47 »
I am sorry to go back to it, but I read a lot about "goji from Tibet" those last days...
I even found out I had it home, so I will give it a trial!

In the auto immune reaction hypethesis, I understand  why it helped a lot or cured :
I spent my time reading many forums about autoimmune illnesses, more or less known, and many suffers were amazed by this result. It has a huge connection with the immune reactions (T-cells + interleukines+ cytokines).
It is the most nutritive plant/fruit in the world. Many desperate cases forgotten by the normal medication way said "it was like a miracle"
The Chinese old papers (5000 years old) talked about those fruits as "god miracle" ^^

The cognitive symptoms are very reduced since in this fruit, there is a component (no found anywhere) which increase a lot the "choline" synthesis in the brain. The choline created by the brain is 5 times more efficient than those in "nootropic" which are not naturals...

In addition, the goji increase a lot the testosterone production (which help decreasing the bad immune reactions, as we all know now).

My grand mom ate that for 50 years old, she is 99 in a good shape.

It is quite expensive :s, but it is possible to have a own tree ! but natural.
I will update if I get the same results as some POIS suffers who get now "full of power".
 

Offline Counterpoints

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« Reply #13539 on: 06/06/2011 00:35:49 »
I have been reviewing some of the recent posts... Congratulations on all the great progress.  It would be nice to update a compendium of cases where there has been a largely successful treatment. (e.g. pyropeach and demografx).
 

Offline Pharaoh

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« Reply #13540 on: 06/06/2011 01:41:55 »
Ladies and Gentlemen,
...

Pharaoh...  I think your low testosterone could be caused by a pituitary adenoma.  I recently read a case similar to yours, where this was the cause.  Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good).  Have you ever had trouble with managing your weight?  This could be relevant.

I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases.  They can affect cortisol, testosterone, sexual function....


Hi Counterpoints,

I've actually considered that possibility.  My uncle suffered from a pituitary disorder, resulting in a growth deficiency and micropenis.  My mother, her two sisters, and their mother all suffered from hypothyroidism requiring surgery.  I agree with you that pituitary abnormalities maybe the root cause, as not only does it affect cortisol, testosterone, and sexual function as you correctly stated, but also dopamine.  According to wikipedia, one treatment option for pituitary adenoma is the use of dopamine agonists.  Furthermore, the symptoms of low dopamine are identical to what we experience with POIS: Depression, ADHD, Social Anxiety, and Anhedonia.  Thanks for recommending this test.  I'm going to try to have one ASAP. 
 

Offline Pharaoh

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« Reply #13541 on: 06/06/2011 01:51:42 »
Ladies and Gentlemen,
...

Pharaoh...  I think your low testosterone could be caused by a pituitary adenoma.  I recently read a case similar to yours, where this was the cause.  Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good).  Have you ever had trouble with managing your weight?  This could be relevant.

I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases.  They can affect cortisol, testosterone, sexual function....


Hi Counterpoints,

I've actually considered that possibility.  My uncle suffered from a pituitary disorder, resulting in a growth deficiency and micropenis.  My mother, her two sisters, and their mother all suffered from hypothyroidism requiring surgery.  I agree with you that pituitary abnormalities maybe the root cause, as not only does it affect cortisol, testosterone, and sexual function as you correctly stated, but also dopamine.  According to wikipedia, one treatment option for pituitary adenoma is the use of dopamine agonists.  Furthermore, the symptoms of low dopamine are identical to what we experience with POIS: Depression, ADHD, Social Anxiety, and Anhedonia.  Thanks for recommending this test.  I'm going to try to have one ASAP. 

I forgot to mention that my brother has an autoimmune disorder requiring he take prednisone.  He's had serious problems with his weight, as have I.  My weight fluctuates dramatically, and I constantly receive comments about it.     Btw, could you kindly forward me more info about the case you read?  Thanks.
 

Offline B_Daniel

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« Reply #13542 on: 06/06/2011 04:30:54 »
I have finally taken the giant leap and registered with this forum!

Yayyyy!  Welcome Stefanie!
 

Offline demografx

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« Reply #13543 on: 06/06/2011 05:45:50 »

I have finally taken the giant leap and registered with this forum!


Yayyyy!  Welcome Stefanie!


I second that emotion!!
 

Offline Vandemolen3

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« Reply #13544 on: 06/06/2011 10:56:55 »
Hi Vandemolen3,

I have finally taken the giant leap and registered with this forum!

No, please don't send dollars in the mail to NORD.

You can send a Postal Money Order, which is paid for in cash at your post office. It's like a bank check. That money order is what you would mail--NOT DOLLARS.

(I can't imagine how difficult it is to be trying to translate our English into another language!)

Tomorrow (Monday) I will ask our accounting department exactly how we accept international donations.  I'll post the information that I obtain tomorrow.

As an aside, I can't believe what all of you are doing here!!! What a GREAT group!!! There is no question that you will meet your goal and finally start getting some answers about this miserable condition.
Hello, welcome to the forum. Now it is clear. I will wait until I get the account number and then go the post office. I heard that you can also do a cash deposit at the bank and that you can fill in another account number than your own account number. But I will try about a few days at the post office. Thanks.
 

Offline horizon

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« Reply #13545 on: 06/06/2011 11:50:22 »
Quote
My uncle suffered from a pituitary disorder, resulting in.... micropenis.

He actually told the whole family ..???... 
fair play to him... :D
 

Offline daveman

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« Reply #13546 on: 06/06/2011 13:32:56 »
Is there a way to PM every member at once?  Once we have enough money in the fund to show others how dedicated we are, we should consider a mass PM.  If not, perhaps 10 of us can each take 20-30 names and send ppl notes.  There have got to be others who'd like to contribute, but who are just unaware of our current fundraising efforts.

I think there's a mass mailer on the SMF forum, there's one on NSF too but if it was within our reach it would send EMails to ALL NSF members, most of which do not even know about our thread.

We can reach those 77 at least. (Although I've never tried it.... but there's always a first time)

 

Offline Pharaoh

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« Reply #13547 on: 06/06/2011 15:18:50 »
Quote
My uncle suffered from a pituitary disorder, resulting in.... micropenis.

He actually told the whole family ..???... 
fair play to him... :D

No, he didn't, but his wife did...  Plus, it was kind of obvious given his other appendages were much smaller than normal.
 

Offline demografx

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« Reply #13548 on: 06/06/2011 17:18:53 »
Is there a way to PM every member at once?  Once we have enough money in the fund to show others how dedicated we are, we should consider a mass PM.  If not, perhaps 10 of us can each take 20-30 names and send ppl notes.  There have got to be others who'd like to contribute, but who are just unaware of our current fundraising efforts.

I think there's a mass mailer on the SMF forum, there's one on NSF too but if it was within our reach it would send EMails to ALL NSF members, most of which do not even know about our thread.

We can reach those 77 at least. (Although I've never tried it.... but there's always a first time)



We also backed up a copy of the online POIS survey before it crashed, which contains the emails of 80 members here who filled out the POIS survey!

Would someone here please volunteer to extract the emails? If yes, PM me your email address and I'll send you the database!
« Last Edit: 06/06/2011 19:25:57 by demografx »
 

Offline Stef

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« Reply #13549 on: 06/06/2011 18:05:17 »
Hi Everyone,

Thank you for welcoming me!

(I've posted this message on the SMF forum also.)

Regarding International Online Donations, this option is currently being worked out on our new web site and will be set up (hopefully sooner rather than later!). As you probably know, charge cards (i.e. Master Card, American Express, etc) will automatically convert your donation into US funds--which makes it easier for everyone involved.

For now, there are two options for international donations (this is not only for the research grant funds, but is also for ALL donations to NORD, so you are not alone!):

(1) You can send an email to Cindy Thayer (cthayer@rarediseases.org) in our accounting department. Cindy is completely trustworthy, keeps everything confidential, and will treat all donations with the utmost discretion (that she always uses). She'll let you know via email when the charge goes through.

In the email to her, you'll need to write:

Name
Address
Credit Card Number, Type of Credit Card, and Date of Expiration
Amount of Donation
Disease Fund  (POIS)



(2) You can send a postal money order, as described previously, with a brief note advising of the fund you're contributing to.  Because there is a fee to do this through the post office in your town, even though a relatively small fee, it is the other option.

My suggestion is to wait until the website can support online international donations, as that will be the easiest and most direct for you.  The most anonymous route is the postal money order.

I hope this helps, and I'll let you know when the international online donation issue with the new site is resolved.

I'm sorry for this inconvenience.  If I could fix it today, I would!  However, as demografx and Daveman know, it I tried to fix this, the entire website would most likely disintegrate! 
 

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