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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6449472 times)

Offline strikef1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16675 on: 03/06/2012 20:02:30 »
Wow!!

Hello, strikef1!

It's not my job to welcome people to this forum -- that's strictly Demografx's and Daveman's domain.

But -- WELCOME TO THE FORUM!!!!!

I've wondered where all of the 45 men who participated in Dr. Waldinger's study had gone. I think you are the one and only participant to grace this forum.

It sounds like you found your way here via the TLC channel's story about "Animus" (his user name), the first POIS forum member to go public, about 2-3 years ago.  He's the POIS PIONEER (my expression, nothing official!).  Animus was so brave to be the first to go public, and now others have followed (Observercenter and Hoping were just involved in a huge story for El Mundo, Spain's largest newspaper).

The ripple effect is alive and well! 2-3 years later, the TLC channel's story is still reaching out to people.

Your isolation because of POIS is now over. You've found your comrades. :-)

Stef

 
Hi Stef,

Yes, my isolation is over and that really feels good! When I went to Dr. Waldinger in 2003 or so and the years after, I searched the internet for POIS. Then I only found one website, indicating the research by Dr. Waldinger as 'remarkable and funny'.
Now it gives me strength to share my experiences with you and for discussion with other people.

I received the articles from Demo and will study them in detail in the coming days.

Rob
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16676 on: 03/06/2012 21:20:09 »
Welcome again, Rob!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16677 on: 03/06/2012 21:23:34 »
Wow!!

Hello, strikef1!

It's not my job to welcome people to this forum -- that's strictly Demografx's and Daveman's domain.

But -- WELCOME TO THE FORUM!!!!!

I've wondered where all of the 45 men who participated in Dr. Waldinger's study had gone. I think you are the one and only participant to grace this forum.

It sounds like you found your way here via the TLC channel's story about "Animus" (his user name), the first POIS forum member to go public, about 2-3 years ago.  He's the POIS PIONEER (my expression, nothing official!).  Animus was so brave to be the first to go public, and now others have followed (Observercenter and Hoping were just involved in a huge story for El Mundo, Spain's largest newspaper).

The ripple effect is alive and well! 2-3 years later, the TLC channel's story is still reaching out to people.

Your isolation because of POIS is now over. You've found your comrades. :-)

Stef

 
Hi Stef,

Yes, my isolation is over and that really feels good! When I went to Dr. Waldinger in 2003 or so and the years after, I searched the internet for POIS. Then I only found one website, indicating the research by Dr. Waldinger as 'remarkable and funny'.
Now it gives me strength to share my experiences with you and for discussion with other people.

I received the articles from Demo and will study them in detail in the coming days.

Rob

Hi strikef1,

Many of us here have had success with niacin in reducing (practically eliminating in some) POIS symptoms. You may not have read this yet, so you might want to consider it.

I have heard members call it a miracle. It can be an emotional experience to be POIS free! (The results in some have been THAT good). Not all report positive results with it, in part this may be due to the procedure for taking it, which is VERY specific. If not followed to the letter, there are NO positive results. If followed correctly, the results are over-whelming.

There is information here http://poiscenter.com/forums/index.php?topic=174.0 and here http://poiscenter.com/forums/index.php?topic=319.0 . This is also one of our forums, many of the same members with 4400 posts and 207 members.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16678 on: 03/06/2012 21:36:26 »

Total Testosterone:679 (normal:249-836ng/dl)


levianthan, please do not take this as a recommendation. I will only share my personal situation.

I felt some POIS relief when I took testosterone enough to put me in the "average" range. I'm older, so I experimentally asked my endocrinologist if I could up the dose 50% more than I really "need". But these averages in my opinion do not reflect POISers' testosterone averages.

It cured my POIS.

HOWEVER, this successful POIS high-testosterone-daily-patches strategy (for me) might have also killed off my sperm count. I will never know. But this doesn't matter to me because I have 2 wonderful grown sons!

AND...testosterone does NOT work for everyone.

_IF_  this approach appeals to you (niacin and some other treatments are definitely also worth considering!), then go see a POIS-compassionate endocrinologist (you can MAKE him compassionate-show him the POIS research). Especially point out that all Dutch POIS studies (2002 and 2011), have been carried out by a co-author who is an ENDOCRINOLOGIST, Dr. Dave Schweitzer.
http://sites.google.com/site/poiswebsite/pois-research-study/dr-david-schweitzer

Best wishes, levianthan!

« Last Edit: 04/06/2012 00:47:20 by demografx »
 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16679 on: 03/06/2012 23:26:42 »

Hi strikef1,

Many of us here have had success with niacin in reducing (practically eliminating in some) POIS symptoms. You may not have read this yet, so you might want to consider it.

I have heard members call it a miracle. It can be an emotional experience to be POIS free! (The results in some have been THAT good). Not all report positive results with it, in part this may be due to the procedure for taking it, which is VERY specific. If not followed to the letter, there are NO positive results. If followed correctly, the results are over-whelming.


Yes, i can assure what daveman is saying. I could announce that 2 more POIS sufferers (Both of them had been writing on this forum long time ago, so maybe they could announce it here in the coming days) who i have been in touch with have got excellent relief with niacin. I contacted with one of them via FB (because there is a FB group about POIS  :0 :0), and told him to try niacin... he reported me later that he was very happy with the result :)
« Last Edit: 03/06/2012 23:29:26 by observercenter »
 

Offline levianthan

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16680 on: 04/06/2012 08:07:18 »

Total Testosterone:679 (normal:249-836ng/dl)


levianthan, please do not take this as a recommendation. I will only share my personal situation.

I felt some POIS relief when I took testosterone enough to put me in the "average" range. I'm older, so I experimentally asked my endocrinologist if I could up the dose 50% more than I really "need". But these averages in my opinion do not reflect POISers' testosterone averages.

It cured my POIS.

HOWEVER, this successful POIS high-testosterone-daily-patches strategy (for me) might have also killed off my sperm count. I will never know. But this doesn't matter to me because I have 2 wonderful grown sons!

AND...testosterone does NOT work for everyone.

_IF_  this approach appeals to you (niacin and some other treatments are definitely also worth considering!), then go see a POIS-compassionate endocrinologist (you can MAKE him compassionate-show him the POIS research). Especially point out that all Dutch POIS studies (2002 and 2011), have been carried out by a co-author who is an ENDOCRINOLOGIST, Dr. Dave Schweitzer.
newbielink:http://sites.google.com/site/poiswebsite/pois-research-study/dr-david-schweitzer [nonactive]

Best wishes, levianthan!

thank you for providing this info..i wonder if you or others have tried the self pricking test with your own semen..did it come positive?

and also have you tested your cortisol levels??low cortisol could make the immune system overreactive

i am willing to try also the niacin treatment..what dose would you recommend?
 

Offline Starsky

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16681 on: 04/06/2012 12:13:59 »
From 100 to 250 mg.
 

Offline badgerstripe

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16682 on: 04/06/2012 21:18:03 »

I have just got my blood test results back from Dr Goldmeier (the clinic lost the first lot which caused a delay of a few weeks)

All the below were normal:
Thyroid, testosterone,prolactin, glucose, liver, kidney, blood screen ( anaemia etc), calcium.

He said my Phospate level was a bit low and will redo that next time he sees me.

Low phosphate levels can have a number of causes, for example high calcium levels can put phosphate levels down, but i obviously dont definitely know why this might be. Poor absorption of nutrients can lead to it and i believe i have suffered from that in the past due to food allergies and intolerances so i could hazard a guess at that. Low phosphate levels can cause confusion, changes in mental state, irritable behavior and pain in muscles, also some of my POIS symptoms.

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS. I find this to be a reasonable explanation but don't think this means "it's all in the mind", rather that body and brain chemistry effects thinking and mood  as a contributory factor in the depressed feeling of POIS. This doesnt completely explain my physical symptoms however.

If anybody has thoughts about any of the above - blood test results, phosphates or POIS's relationship to anxiety I would be glad to hear them.
 

Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16683 on: 04/06/2012 23:45:13 »
http://poiscenter.com/forums/index.php?topic=98.0

This is where you can post your blood test results ! Everybody should post it if we want to understand some medical disorders :)
 

Offline badgerstripe

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16684 on: 05/06/2012 00:10:20 »
thanks Habibou, have posted there.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16685 on: 05/06/2012 01:19:25 »

http://poiscenter.com/forums/index.php?topic=98.0

This is where you can post your blood test results ! Everybody should post it if we want to understand some medical disorders :)



Thank you, Habibou.
« Last Edit: 05/06/2012 01:21:10 by demografx »
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16686 on: 05/06/2012 08:40:27 »

I have just got my blood test results back from Dr Goldmeier (the clinic lost the first lot which caused a delay of a few weeks)

All the below were normal:
Thyroid, testosterone,prolactin, glucose, liver, kidney, blood screen ( anaemia etc), calcium.

He said my Phospate level was a bit low and will redo that next time he sees me.

Low phosphate levels can have a number of causes, for example high calcium levels can put phosphate levels down, but i obviously dont definitely know why this might be. Poor absorption of nutrients can lead to it and i believe i have suffered from that in the past due to food allergies and intolerances so i could hazard a guess at that. Low phosphate levels can cause confusion, changes in mental state, irritable behavior and pain in muscles, also some of my POIS symptoms.

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS. I find this to be a reasonable explanation but don't think this means "it's all in the mind", rather that body and brain chemistry effects thinking and mood  as a contributory factor in the depressed feeling of POIS. This doesnt completely explain my physical symptoms however.

If anybody has thoughts about any of the above - blood test results, phosphates or POIS's relationship to anxiety I would be glad to hear them.

Hi Badgerstrip. Did you get any allergy tests done?
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16687 on: 05/06/2012 08:41:11 »

I have just got my blood test results back from Dr Goldmeier (the clinic lost the first lot which caused a delay of a few weeks)

All the below were normal:
Thyroid, testosterone,prolactin, glucose, liver, kidney, blood screen ( anaemia etc), calcium.

He said my Phospate level was a bit low and will redo that next time he sees me.

Low phosphate levels can have a number of causes, for example high calcium levels can put phosphate levels down, but i obviously dont definitely know why this might be. Poor absorption of nutrients can lead to it and i believe i have suffered from that in the past due to food allergies and intolerances so i could hazard a guess at that. Low phosphate levels can cause confusion, changes in mental state, irritable behavior and pain in muscles, also some of my POIS symptoms.

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS. I find this to be a reasonable explanation but don't think this means "it's all in the mind", rather that body and brain chemistry effects thinking and mood  as a contributory factor in the depressed feeling of POIS. This doesnt completely explain my physical symptoms however.

If anybody has thoughts about any of the above - blood test results, phosphates or POIS's relationship to anxiety I would be glad to hear them.

Hi Badgerstrip. Did you get any allergy tests done?
That should have been badgerstripe. Almost as funny as my last mistype :)
 

Offline badgerstripe

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16688 on: 05/06/2012 09:57:16 »
No allergy tests yet but i am seeing allergy specialist in relation to POIS at end of month.
Badgerstrip (!)
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16689 on: 05/06/2012 14:53:06 »

I have just got my blood test results back from Dr Goldmeier (the clinic lost the first lot which caused a delay of a few weeks)

All the below were normal:
Thyroid, testosterone,prolactin, glucose, liver, kidney, blood screen ( anaemia etc), calcium.

He said my Phospate level was a bit low and will redo that next time he sees me.

Low phosphate levels can have a number of causes, for example high calcium levels can put phosphate levels down, but i obviously dont definitely know why this might be. Poor absorption of nutrients can lead to it and i believe i have suffered from that in the past due to food allergies and intolerances so i could hazard a guess at that. Low phosphate levels can cause confusion, changes in mental state, irritable behavior and pain in muscles, also some of my POIS symptoms.

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS. I find this to be a reasonable explanation but don't think this means "it's all in the mind", rather that body and brain chemistry effects thinking and mood  as a contributory factor in the depressed feeling of POIS. This doesnt completely explain my physical symptoms however.

If anybody has thoughts about any of the above - blood test results, phosphates or POIS's relationship to anxiety I would be glad to hear them.


Im sorry, all I can say is HOGWASH!

Doesn't fit at ALL. He needs a good dose of POIS to know what we go through. There's a lot more to it than what he is suggesting.

If there is a consequent drop in certain stimulating and "feel good" hormones after orgasm, this is not normal, even if you do tend to rely on sex to relieve anxiety. A normal person, can be "horny" and relieve himself at least once or twice a day and not suffer these kinds of consequences. MAYBE he might come to feel a little weak or "burnt" out. This is NOT AT ALL like POIS.

This man has no idea of what POIS is in my honest opinion. And Yes, what about the physical symptoms?!!


Sorry!!

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16690 on: 05/06/2012 15:41:00 »
That was my reaction, too, when I read badgerstripe's post.

I was dismayed with that plus the video. Originally I was very hopeful of his enlightened work in accepting POIS patients, but now?

Sorry with Daveman!!!
« Last Edit: 05/06/2012 20:31:59 by demografx »
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16691 on: 05/06/2012 17:26:15 »
Badgerstripe,

The blood tests that Dr. Goldmeier ordered are very basic tests.  So, it isn't surprising that nothing showed up that could potentially point to an immunological problem, a hormonal imbalance, or an inflammatory condition (these are just some examples).

He may be a wonderful psychiatrist -- I have no idea if he is or isn't -- and may even have some worthwhile techniques to offer that could help lower a bit of the stress that POIS induces. But his work-up from a medical standpoint sounds far from complete, especially in a condition as complicated (and, to date, mysterious) as POIS.

Is Dr. Goldmeier a psychiatrist? Does he have any other specialty?

I ask because I'm trying to understand his involvement with POIS and why is he referenced so frequently on this forum.  I've found him on the databases that we use, but could not determine why he's considered by some of the forum members as a POIS expert.  This is not to cast any aspersions -- I really don't know his background.  Input would be appreciated!

(The fact that his office lost your first set of blood tests is not a good sign, just FYI.)

I wish you the best of luck with the allergist that you'll be seeing.  However, keep in mind that POIS might not be an allergy (it might be, but nobody knows yet!).

It's all very frustrating, and I can only imagine what it's like to try to go through a POIS workup without any basic, scientific research having been undertaken.

Best wishes to you!

Stef   







 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16692 on: 05/06/2012 18:30:36 »
Thank you, Stef! I'm partly to blame for tagging him as a POIS expert. I was impressed with him because he is very rare as a "POIS physician" in that 1) he wrote a POIS paper (only a handful of POIS papers written anywhere) and 2) he showed enthusiasm for seeing POIS patients in London.

I simply was  not aware of his POIS-is-psychosomatic leanings.

Sad to say, Goldmeier is now on my "Doubtful" list : - (

« Last Edit: 05/06/2012 18:39:26 by demografx »
 

Offline makrofag

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16693 on: 05/06/2012 19:34:38 »
!!! Feeling good or feeling bad about having and orgasm or using it for anxiety relief has nothing to do with POIS. If the silly Goldmeier theory was true then there would be hundreds of thousands of POIS already documented throughout the human history because of many obvious reasons. Nothing to really do with the psychological aspect of the whole damn thing.

But still... there could be something wrong with the brain - not physically (as people already had brain scans and no anomalies were seen) but maybe something on the more "autonomous" side of things with an interaction with some kind of an unknown and new factor (let's say 1950 - present) that was not present in the past. God knows :P
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16694 on: 05/06/2012 20:40:32 »

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS.

Everybody does this. I talked to my psychologist friend about this and he said it's common that guys have O's to relieve stress or tension. In itself, this doesn't appear to be a problem. If it's chronic anxiety and you're having O's every day to relieve it then that's possibly different.
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16695 on: 05/06/2012 20:42:23 »

Another of Dr Goldmeier's suggestions was that POIS was caused by my using sexual behaviour to ease anxiety ( i know i do this) and the consequent drop in certain stimulating and "feel good" hormones after orgasm can be part of POIS.

Everybody does this. I talked to my psychologist friend about this and he said it's common that guys have O's to relieve stress or tension. In itself, this doesn't appear to be a problem. If it's chronic anxiety and you're having O's every day to relieve it then that's possibly different.
What I mean is that I do this also and that's why I ended up talking about it. There's nothing to be worried or ashamed of here. And, in any event, the POIS symptoms would cause anxiety even if there was no other reason to be anxious!
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16696 on: 05/06/2012 22:51:43 »
!!! Feeling good or feeling bad about having and orgasm or using it for anxiety relief has nothing to do with POIS. If the silly Goldmeier theory was true then there would be hundreds of thousands of POIS already documented throughout the human history because of many obvious reasons. Nothing to really do with the psychological aspect of the whole damn thing.

But still... there could be something wrong with the brain - not physically (as people already had brain scans and no anomalies were seen) but maybe something on the more "autonomous" side of things with an interaction with some kind of an unknown and new factor (let's say 1950 - present) that was not present in the past. God knows :P
The absence of previously documented cases in our case does not suggest that POIS is a new phenomenon.  You may be correct that new external factors in our environment have precipitated this disease, but I think it has more to do with the rarity of the disease and the stigma surrounding it.  I believe the only reason it was first described by doctor Waldinger had to do with the fact that he "luckily had two patients" with the phenomenon and then decided to search for others.  I think if a physician were to encounter just one patient with pois during their career, but could not find another doctor or documentation of the disease listed anywhere, that they would dismiss it as psychosomatic.  Furthermore, doctors who looked into the symptoms may have come to the conclusion that their patient was suffering from Daht syndrome.  Documenting the case as Daht syndrome would there for never arise suspicions of a new disease.  The lack of "visible signs" and "objective data pieces", such as positive lab value and scans makes it real hard for a physician to believe that he is encountering a "real" and "new" disease.

As we know with organizations like NORD, that there are always new rare diseases being discovered.  Having objective abnormal data is the only thing that can solidify these as new diseases.  Knowing the etiology of the disease is not necessary, however what is necessary is showing scientist something concrete that they can all see and agree upon.  Without Waldingers study showing that a majority of POIS patients had positive allergy tests to their own semen, we would not have any objective data.  Whether, these positive semen allergies are relevant or not I don't know, but I do know that NORD would have not considered us as a new disease without them.
« Last Edit: 05/06/2012 23:10:55 by lauracostis »
 

Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16697 on: 05/06/2012 23:40:26 »
We need a brain Functional MRI  before, while exciting with an O, and during POIS to understand what is wrong with the brain functions.

The past stuctural brain MRI only could show " the pituitary adenoma" some POIS patients got, but nothing more.

When Dr Goldmeier told me I should practice meditation last august, I thought it was a joke...But he made me done the Own semen allergic tests and it was positive (2 cm).
Since, I started a desensibilization but it is hard to know if it helps because I am in Chronical Fatigue state!
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16698 on: 06/06/2012 01:47:23 »
Has someone tried immune supression?

Yes, I know of one member who has tried an immunosuppressant with no effect on POIS.
 

Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16699 on: 06/06/2012 05:26:31 »
Has someone tried immune supression?
Yes, I know of one member who has tried an immunosuppressant with no effect on POIS.
Correct. After testing positive for a semen allergy, I experimented with 30-45mg of prednisone (an immune system suppressant). I tried taking the medication several hours before O. I also experimented with taking it directly after an O. It didn't help me. Still, I would encourage others to consult their doctors if they're interested in prednisone or a similar drug. It never hurts to have more 'test subjects'
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16699 on: 06/06/2012 05:26:31 »

 

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