[demografx]

John, this sounds terrific!! I'm really sorry to hear about Phase B, but is it at least any shorter in time? Phase A lasts a week, how about Phase B?

[Counterpoints]

I agree that we should not expect miracles, but to say "you can't expect [even] the...5th doctor to be very helpful" is - just in my opinion, today - very discouraging and not really accurate. I do, however, respect your words of caution. It will be different for everyone, I suspect. Call me Mr. Pollyanna []

You can't expect any *individual* doctor to be particularly helpful, unfortunately; however, if you are persistent with the doctors you do see, and in seeing new doctors, I think you can expect to be helped.  Obviously in this case such persistence is worth the efforts.

My point is that if you expect too much from any one physician, you will likely set yourself up to be let down.  Generally, physicians are not going to seriously exert themselves to study a completely unknown condition.  There are a variety of reasons for this. This is even true of conditions like Cushing's disease, where a decent body of research has been conducted, and there are known treatments.  Having read through personal stories of Cushings, many sufferers are brushed off for years (and sometimes even belittled!), by one doctor after another, until he or she gets lucky and finds a physician willing to "go the extra mile" towards a rigorous examination and diagnosis.

The overall message is not to get discouraged if you see a doctor and he doesn't go out of his way to help you.  Even doctors who do not think this is psychosomatic, and have some genuine concern, may not do very much.  It is important to be extremely persistent, and to keep seeing new physicians, until you find that one who will "go the extra mile" -- one who will examine you carefully, see you more than once, consider tests that will be useful, and ultimately, have a plan of action to help you.  Generally, the physicians most receptive to studying unknown conditions, and who are willing to conduct experimental tests, and take some risks to find out what's going on, are researchers -- they publish their research in journals.  So seeing a research endocrinologist seems like the most promising option, in my opinion.   These doctors will usually be research professors at universities.

Also, I suggest while you're talking to the doctor, to make it clear that your concerns are important, and that you need a plan of action.

[Counterpoints]

B_Jim, my creatinine was tested high. Since it is produced in the pancreas, I wonder if that relates at all to your theory?

Interesting that you mention this.  My creatinine has repeatedly tested high.  It's something that's usually measured in a 24 hr urine collection, for cortisol.  So that's why I've had it tested.

[John21 (OP)]

Demo,
I'm estimating that Phase B typically lasted between 4-7 days.

[Jdubs]

Hi all,

I just wanted to add to the info that I had already put of myself here.

So a bit about myself: I love the arts. I play the tenor sax, love jazz, and love understanding culture around me. I like to create ideas. My focus at the moment is toward my major in college (becoming a freshman next year) at UCLA as a Design Media Arts major. I'm hoping that UCLA will have some cooperative staff, but I guess I can't get my hopes too high. Seeing that my main love is creating ideas and representations of the world around me, it becomes EXTREMELY frustrating when I become completely inable to create.. well.. anything.

My symptoms usually last about 48 hours(longer depending on the ejaculation or arousal thereafter). When it becomes close to the end of the 48 hours, I usually try to work out a bit and rub it off. Maybe rest a bit after the work out, and a few hours later or the next morning will be fine. My symptoms are pretty much what everyone else has already stated- dhea, heavy fatigue, some stuffy nose (congestion), inability to think creatively (or put words/actions well). I can't improv music or think of new sentences. Aches in body too. When I try working out or flex a bit, my muscles feel separate from my body and aching (I'm sure some of you must feel this too). I also tend to forget things I seemed to learn during the symptoms..or sometimes some things I learned a bit before. HEAVY sleepiness. Very inconsistent sleeping, I'd fall asleep in a few hours nap sometimes but other times can't sleep at all. Lack of emotion.. this is the most damaging of all, I feel. People will tell me jokes and I'll just look at them like, "ok..." I lose sympathy for anything. Inability to control feelings if there are any. Lots of depression.. fortunately I feel very hopeful of life after it's all over, but during it.. I feel sometimes I could kill myself within that time period I have symptoms.

That's all I remember for now.. I'll add more later.

[demografx]

For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A. 

John, 

We've got to destroy Phase B!

 []

CONGRATULATIONS AGAIN ON "NO A"!!

[demografx]

Jdubs,

Thanks for posting. Sounds like your POIS symptoms are close to many of ours. It's really sad to see creativity go out the window with this vicious ailment of ours.

Your emotional reaction of "ok" to a joke is so familiar to me! (and others I'm sure)It is pathetically disturbing to our well-being!

Many of us have had your cycles of post-POIS hopefulness and then, upon return of the inevitable, descended into your depths of hopelessness. I certainly have. But the consistent thing to know is DON'T GIVE UP. You have it far far better than many sufferers just by finding this place and becoming active in it. Many of us have found relief from just that activity: posting, reading, researching right here.

And the timing couldn't be better: I was in the "wilderness" for over 30 years. No one to talk to. And when I finally mustered the courage to say something, I was shot down with "blank stares" or near-ridicule. Now we have a "community" building strength, knowledge and....hope!

I somehow survived all these 30+ years by PUSHing myself to the next step. Any positive step, no matter how silly or "small". Seeing another doctor, therapist or "guru". Calling "experts" around the world. Reading. Lectures. Trying new techniques. Trying reasonable treatments. They might have all produced little, but they KEPT ME GOING. And they landed me here, finding John21's post and getting very involved on this forum.

And, incredibly, so far, my POIS treatment is working! It's a new life.

We've been here now at this forum a little over two years and the progress has been tremendous. Just ask John21 (POIS thread's very first poster!), B_Jim, Counterpoints, Martin, Guthrie, Pyropeach and other "oldtimers".

Welcome again. Glad you're here!

[underwater]

Jdubs--
You will find a cure. You're very young, and this forum will provide you with many great ideas. You will do fine at UCLA. As Counterpoints observed, there are a lot of people with other types of disabilities. You will be at home at UCLA (I know the place quite well). I credit this forum for helping me focus. I have had general anxiety disorder and POIS for a long time (I'm 60). This forum has helped me nearly wipe out my GAD in just over 6 months! HOW? Stay focused. Be positive. Keep accurate records of how you feel. I think UCLA has some good student counseling-If you still have POIS when you get there. I won't comment about my POIS, because I think we each have to find our own way. This forum will give you the best support in the world.
Just to know that you are with others who share the same difficulties is a great help.
One last thing that is hard to accept: Progress may not be linear and continuous. There will be pitfalls and regressions. But you will eventually succeed. The most difficult thing for me is to accept and work through the pitfalls as I progress.
But my accurate record keeping tells me that the long term prognosis is quite hopeful.

[GoingCrazy]

Update
I have tried Relora in small amounts recently to test my tolerance for it, and it gave me a glimmer of hope. (I tried it previously but it affected me too much and I felt like I was drugged.) Last weekend I had an NE and I took the ¼ amount that I was experimenting with, along with my garlic. I took the Relora the day before and the day after, about 60mg each. (It was in a 250mg capsule so I divided up the powder and consumed it with some water.) I had no symptoms, but the really surprising thing was that I had the best sleep I have had in a long time the following night. Whereas I usually wake early and have a disturbed sleep thereafter that night was perfect. This could be a coincidence, but considering the success others here have had with Relora it may be responsible. The odd thing is that it is now over a week later and I am experiencing the “burnt out” phase that I would typically get with my POIS. For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A. 

John21, I have also noticed a lot better sleep while taking relora.  The only thing I recommend is to stop taking it once you feel like it has no affect on your mood, once you feel like you achieved that "mood" while taking it I suggest to stop for a few days and still see if you need it because it will constantly make you tired.

[John21 (OP)]

Goingcrazy,
After taking it for a few times 1/4 capsule doesn't have a noticable side effects, but I will keep that in mind. Thanks.

[demografx]

Today, the early hours of Day Zero were a little unpleasant. Somewhat fatigued and a bit anxious. A nap broke the ice. Last few hours were almost POIS-free!

This is the way I used to feel on Day 4.

[demografx]

It won't let me post long messages

Has anyone else noticed problems either with posting a Private Message or posting a message here at the forum?

If the post is lengthy, I find the Private Message "jumps back" to an earlier part of the message. I could only cut and paste into Notepad, continue typing, and then cut and paste back out to PM to make it work.

Anyway, I registered a complaint. There was a problem with this recently, assumed fixed, but maybe now it's come back.

[demografx]

Posted last year, I thought it might be interesting to re-post this for the newcomers, for searching our previous posts on fenugreek, relora, etc.

SEARCH POIS FORUM WITH GOOGLE

I just stumbled on this. As many of you know, the POIS forum  Search function is a work in progress. Can be frustrating.

So I searched Google to see how to better Google-search our POIS Forum. Why? Because we have an overwhelming amount of data: nearly 2 years' worth of posts from 130+ Forum members.

In the Google search box, type
whatever you're interested in finding[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS Forum.

whenever I tried to use Google "as is" - without the way I described above - I would typically find only about two (2) results.

Google even provides you results with the Message# for each result.

Happy Googling!

[demografx]

POIS DIARY

Today, the early hours of Day Zero were a little unpleasant. Somewhat fatigued and a bit anxious. A nap broke the ice. Last few hours were almost POIS-free!

This is the way I used to feel on Day 4.

A scary part of POIS is the feeling that "this will NEVER go away". I felt that again yesterday morning. In spite of DECADES of experience that the fog ALWAYS lifts eventually. And with treatment it lifts now within hours. This morning (Day One) is once again terrific, and hopefully writing that will bring hope to others.

[demografx]

POIS THREAD NAME AS A QUESTION?

I discussed this with another mod, and according to Chris, the founder of this Naked Science Forum, it allows the internet search engines to find the information better when it's in the form of a Question. She also wrote, "Make sure Your Question kind of gives a general feel of the topic!"

Examples, "Do I have Post Orgasmic illness Syndrome (POIS)?","What is Post Orgasmic Illness Syndrome (POIS)?"

Without using a Question, we have attracted over 130 posters and nearly 300,000 page views.

Any thoughts? Let it stay? Change it?

[Jdubs]

Demografx,

I think either way, people who are desperate enough to find an answer will find it one way or another.

As for spreading awareness, I feel there's so many other ways that haven't been explored yet, and changing this forum too much probably wouldn't matter large scale.

I'm planning on getting checked sometime next week.


I'm starting to feel that any kind of stress is bad. Just feel good! Being happy overall I feel lowers recovery time somehow. Just stopping all the analyzing of one's self can reduce the effects of some symptoms, I think. But it can only do so much, I think it just helps with the pain DURING recovery from symptoms somehow.


EDIT//

also, dance. and sing. instead of feeling like you're forcing yourself not to give in, just know that you don't have to, and lift some weights. of course, I think just trying to improve over time is the best idea. trying to make big differences in short amounts of time is really stressing and can make it worse.

[demografx]

Jdubs, thanks for that! My tendency has always been, "if it's not broken, don't fix it." We have done very well with Google and nothing else.

Any suggestions for spreading awareness are more than welcome!

I agree, the more we focus on "living large" out-of-POIS, the better we'll feel when POIS hits.

Many thanks for your comments.

Congratulations on getting your check-up next week!!

[Jdubs]

Demografx,


Sorry for posting too much (but who can resist when a hint of progress has come up), but I was referring to thinking and lifestyle WHILE in POIS, not when out. I do think that lifting weights and eating accordingly probably reduces symptoms while IN POIS, but just in case you fall in that HORRIBLE stage of POIS that you've fallen in before, I think there's a few things that can help:

1. Relieve yourself. Whether this means by emission, or anything else.  Just sit back and think. Sit or walk around, just move around a little bit and think. Don't think of deadlines or money or any kind of work. Hey, THEY'LL WAIT FOR YOU. Let yourself say this: "Hey world, give me a sec, I'm just chillin' here for a bit." Having that mindset of keeping YOUR PACE. (You guys probably do this stuff already though). I've tried this recently, and it does help me a little about feeling better during it I think. READING THIS IS PROBABLY MAKING YOU FEEL UNCOMFORTABLE. Whenever you feel emotions rise, just stop what you're doing and start humming your favorite tune. Yeah, I feel like sleeping, and I may close my eyes or lay down for a bit, but I won't sleep. I just stay in a calm state and try not to let things around me affect me emotionally (I feel emotions can worsen symptoms overall.)

2. Drink lots of fluids? (or at least enough) A lot of the time I feel I forget to drink enough fluids while in symptoms. When I drink a lot and go to the bathroom a lot, I feel it relieves me in a way. You'll remember to get your daily doses but somehow I think it stalls arousal down there..

Listening to calm music feels good. But do whatever you need to feel good, just don't feel that any specific thing you're doing is wrong.

[John21 (OP)]

Sorry for posting too much (but who can resist when a hint of progress has come up), but I was referring to thinking and lifestyle WHILE in POIS, not when out. I do think that lifting weights and eating accordingly probably reduces symptoms while IN POIS, but just in case you fall in that HORRIBLE stage of POIS that you've fallen in before, I think there's a few things that can help:

1. Relieve yourself. Whether this means by emission, or anything else.  Just sit back and think. Sit or walk around, just move around a little bit and think. Don't think of deadlines or money or any kind of work. Hey, THEY'LL WAIT FOR YOU. Let yourself say this: "Hey world, give me a sec, I'm just chillin' here for a bit." Having that mindset of keeping YOUR PACE. (You guys probably do this stuff already though). I've tried this recently, and it does help me a little about feeling better during it I think. READING THIS IS PROBABLY MAKING YOU FEEL UNCOMFORTABLE. Whenever you feel emotions rise, just stop what you're doing and start humming your favorite tune. Yeah, I feel like sleeping, and I may close my eyes or lay down for a bit, but I won't sleep. I just stay in a calm state and try not to let things around me affect me emotionally (I feel emotions can worsen symptoms overall.)

2. Drink lots of fluids? (or at least enough) A lot of the time I feel I forget to drink enough fluids while in symptoms. When I drink a lot and go to the bathroom a lot, I feel it relieves me in a way. You'll remember to get your daily doses but somehow I think it stalls arousal down there..

Listening to calm music feels good. But do whatever you need to feel good, just don't feel that any specific thing you're doing is wrong.

If your "HORRIBLE stage of POIS" is relieved by singing songs and drinking water I think that your malady is categorically different that mine.

[rock27]

Sorry for not posting so long.
I was busy interpreting test results and doctor visits and lifting weights.

Test results
Testosterone before emission : total 9.77 ( 9.72-38.17) free 221 (174-729)
Testosterone after emission : total 9.05  free 202
I took tests 1 hour apart. So there is a small decrease, with both values of total T just below normal and free very low-normal. I didn’t find an increase in T, still wonder what the test would have shown if I had taken it 5 to 10 minutes after emission.

I also have an out-of-pois reading of 10.9 and  342. Surprisingly one test 2 days after emission came back looking a third above lower range (different measures are used), I did't feel bad then anyway. It was after the second emission in a week and I slept like a baby the night before. Also my THS ranges between 2.2 and 4. (0.25-3.10)

Doc’s visit
Of course first doc’s visit was with the values in range. In 2 weeks I have a new meeting with another endocrinologist, will show the new values of testosterone.  I also showed my low T to my GP. He said it might be causing symptoms (I just quoted symptoms not the sexual thing), but he also said when you don’t exercise much your T-levels go down. I think I’m quite active. But anyway, in preparation to new endo visit, I picked up weightlifting.

Nightly orgasms
Still stuck with many many nightly orgasms (not emissions). I think someone called those brain orgasms. I’m off eastern medication for 2 months, so any side effects should be gone now. I keep waking up at 1 or 4, not being able to sleep and the next day pois symptoms are present. If I reach day 2 (without orgasm) I feel much better than last year. So my main focus now is to break the cycle somehow. If anyone has ideas that have not been mentioned here, please share.