[Dean93]

Throughout all the years that I've had POIS it has changed a lot. The most notable change is that I have a lot less brain fog. I think this happened after taking relora. After my brainfog-less POIS episode while on relora, I haven't had the same brain fog that I always had. When I say brain fog, I'm referring mostly to derealization. This "brain fog", to me, was like an actual "pseudo-physical" thing, like an actual fog in my head, not just a loss of concentration. It is the thing that would make me pick up an actual physical object and say "Is this real?", "Is this actually there?". I felt entirely detached from the world around me, like i couldn't reach out and touch someone. That doesn't happen anymore, but I think it has kind of screwed up my gauge of what is normal. Now out of POIS I don't know if I have just a little brainfog, or If that's just "baseline" for me. Things aren't completely clear, visually, to me, even out of POIS. The question I ask myself when holding an object now is "How close am I supposed to feel to this?"

If I rub my eyes, It gets a little better, so I'm thinking it might be physical. Perhaps its my glasses...I don't know.

Another note is that, compared to when I was a freshman in highschool, my POIS episodes are now less "desperate" than they were back then. I'm going to go ahead and attribute that to having had it longer and being "jaded", but mostly to having found this forum, putting a name to it and knowing that there is some hope for a cure. Thank you to John, who started this thread and everyone that works to keep it going. I don't know what would have done without it even for only 2 years!

[GoingCrazy]

Throughout all the years that I've had POIS it has changed a lot. The most notable change is that I have a lot less brain fog. I think this happened after taking relora. After my brainfog-less POIS episode while on relora, I haven't had the same brain fog that I always had. When I say brain fog, I'm referring mostly to derealization. This "brain fog", to me, was like an actual "pseudo-physical" thing, like an actual fog in my head, not just a loss of concentration. It is the thing that would make me pick up an actual physical object and say "Is this real?", "Is this actually there?". I felt entirely detached from the world around me, like i couldn't reach out and touch someone. That doesn't happen anymore, but I think it has kind of screwed up my gauge of what is normal. Now out of POIS I don't know if I have just a little brainfog, or If that's just "baseline" for me. Things aren't completely clear, visually, to me, even out of POIS. The question I ask myself when holding an object now is "How close am I supposed to feel to this?"

If I rub my eyes, It gets a little better, so I'm thinking it might be physical. Perhaps its my glasses...I don't know.

Another note is that, compared to when I was a freshman in highschool, my POIS episodes are now less "desperate" than they were back then. I'm going to go ahead and attribute that to having had it longer and being "jaded", but mostly to having found this forum, putting a name to it and knowing that there is some hope for a cure. Thank you to John, who started this thread and everyone that works to keep it going. I don't know what would have done without it even for only 2 years!

Yes, compared to last year for me I'm probably 1.5 - 2 times better.  I'm pretty sure that if we stay on this track it might eventually disappear.  I feel EXACTLY the same as you, about the brain fog and everything.  I'm just following John21's celibacy and hopefully it will go away within the years.  I think we can bring ourselves out of this.  I view this disease as another form of depression that if we commit 100% we can come out of.  Diet and exercise and non-orgasm, I have hope, could beat it.

[GoingCrazy]

For me I was thinking that yes it could possibly be hormonal, I've practically had POIS the same amount of time that I've had acne, and my acne is slowly diminishing, hence POIS is getting better... At least for me.

[THISFORUMROCKS!]

So for B_JIMS's summary of POIS cases and others interested I just wanted to note since I have not specifically in the past that I have had the common POIS symptoms as described in the POIS website to a significant extent, of both the mental and physical varieties:

"Extreme mental fatigue, difficulty concentrating, inability to comprehend/retain what is read, shortened attention span, loss of speech fluency, cloudy mindedness, headache, anxiousness, and depression are most commonly experienced by those in the first category.  Those in the second category commonly have diarrhea, constipation, muscle aches, sweatiness, cold spells, feeling hot, physical fatigue, and restlessness."
AKA [:0] [xx(] [!] [:-'(] [] []

Of course, once I figured this out about a year or two ago I undertook the immense mental task of committing to no more O's.

So now after 8 months of no O's I know this makes the biggest difference- obviously, but more easily said than done. Then again sometimes I feel similar symptoms to a much less lesser degree from time to time, even with no O. For example if some hottie walks by and my mind wanders a bit too much- no O but it seems to activate some process regardless.
   
I figure I have had POIS symptoms for about 15 years; since I was young. It has significantly impacted my social life, family relations, work relations. I have tried several antidepressants and ADD medications with no benefits. I know I have POIS, but additionally have strong suspicions that I may have LYME and CELIAC. I had a vitamin D deficiency which was resolved and something good for others to avoid. I have GILBERT syndrome. I had a salivary "performance" test done by Body Balance that indicated testosterone outside and above normal range, cortisol outside and below normal range and DHEA within normal range. I had a hair analysis mineral check done by Body Balance that indicated Antimony, Lead, Mercury, Cobalt, Copper, and Zinc were all "outdide range" above the normal reference range. Most notably my lead and mercury levels appeared ridiculously high. I had been eating a bunch of fish but I don't know if that completely explains that or not. A later blood test showed mercury levels at just above normal range. Without multiple tests it is hard to know how accurate the above ones were, but I hope you found this interesting.



Some 5 important things I have learned about mitigating POIS to summarize till we find the cause/cure:
-No "O"!
-An upbeat mental attitude helps, including having this forum for support.
-Nutrition and moderate exercise are key.
-Proper sleep including enough hours and regular to bed and wake up times.
-Relaxation techniques whether it be deep breathing, massage, meditation, whatever.

Sure, the above may seem obvious or unrelated to POIS specifically depending on how you look at it, BUT I think that all things related to general health can have an impact on POIS. POIS seems to be able to aggravate and exploit/feed off any existing health issues, whether mental or physical, so the fewer other health problems the better.

And finally, I may have some zany POIS theories from time to time, but they are all with good intention...   

[THISFORUMROCKS!]

Also of interest: I have consistently in the past noted the POIS related symptom of having EXREMELY RED, IRRITATED, DRY eyes.

This is more of a minor inconvenience relative to the other POIS issues, though it can make me  [!] when  [)]'s don't take me seriously, and wrongly assume that I am a care-free pot smoker who is constantly stoned, even at work  [:0] [xx(] [B)].

[devastated]

Dear friends,

You cannot begin to imagine how glad I am that I discovered you. My warmest congratulations on your efforts and contribution to clarifying what the POIS syndrome is and how it can be dealt with. I'm 34 years old male from Greece and since very early in my life I was suffering from this condition. I knew somehow that I couldn't be a unique case and more people were suffering from this as well.

Although the information gathered in these 200+ thread pages is invaluable, the webmasters should really consider organising it a bit better. Lots of info is buried in an endless frustrating pile of posts...it's nearly impossible to read everything in a row unless I bookmark each time the last page where I stopped reading.

I came across this thread almost at the same time with this forum: newbielink:http://recover.forumup.org [nonactive] (it requires free registration). I think it relates to some Dr Lin, but the posts pinpointing the symptoms and possible cure appear quite accurate.

I'll use all the info I gathered so far in order to describe my own symptoms:

    * Headaches or pains to the back of the neck that can extend to migraines - due to excessive inflammatory hormone prostaglandin E-2 release and excessive dopamine/norepinephrine-epinephrine conversion in the brain after the acetylcholine, serotonin and GABA nervous system due to sexual exhaustion.
    * Depression, stress, anxiety and emotional instability (Mood Swing) - due to deficiency of the neurotransmitters acetylcholine, dopamine, serotonin add GABA
    * Attention Deficiency and Absence mind (losing mind concentration and memory) - due to the deficiency of the brain's neurotransmitters serotonin and acetylcholine - memory protection failure or insufficient memory.
    * Intense cognitive impairments (lack of judgement ability, diffuculty to evaluate a situation, confusion, brain fog, tendecy make many random mistakes and repeat them over and over again, difficulty to learn from mistakes, difficulty to adopt to new environments / conditions, depersonalisation / derealisation, panic attacks. In extreme cases temporary inability to find the right words to express my thoughts or to read out loud properly without making repetitive mistakes, inability to show any form of self-discipline for long periods of time)
    * Fatigue, tiredness and exhaustion - the parasympathetic nervous recharging/healing system is out of order; the pituitary releases excessive prolactin to shut down the testicular function.
    * Visual snow / sunlight sensitivity - due to disorders of the nervous sensing (acetylcholine nervous) and amplifier (dopamine nervous) circuits, a deficiency of the serotonin/GABA nervous modulation in retina, excessive stress hormones, or a poor retinal blood circulation or an arterial constriction due to deficiency of prostaglandin E-1 or/and Nitric oxide or sympathetic nervous action on the beta receptors
    * Tinnitus / buzzing right ear - reasons possibly same as above
    * Weak immunity - neuro-immune disorder resulting from the deficiency of the neurotransmitters acetylcholine and dopamine. For example, easy to catch cool or get sick and requiring a longer time to get recovery from sickness
    * Increased hair loss during that period / decoloring (premature white hair).
    * Short breathing and irregular cardiovascular output (sympathetic) / can extend to slight arrythmia - a weakening brain's acetylcholine/serotonin and parasympathetic/vagus nervous function.
    * Sleeping disorder and its associated symptoms- due to the deficiency of serotonin and melatonin, both of which are synthesized by the pineal gland with GABA and norepinephrine, or due to excessive pituitary LH and FSH hormones in an attempt to revive a weak/dying testicular/ovarian function. This causes a deficiency hGH and excessive inflammatory hormone prostaglandin E-2 release into the bloodstream, an undercharging of the parasympathetic nervous system, and an excessive sympathetic nervous fire (Flight or Fight), resulting in back/joint/ligament pains or cramps, urinary or bowel incontinence as a result of no or insufficient healing (restoration) power (prostaglandin E-1) in the organs, muscles, ligaments and joints.
    * Excessive Sweating - the sympathetic/epinephrine nervous fires burning the entire body due to an constantly excessive dopamine/norepinephrine-epinephrine conversion in the hypothalamus and adrenal medulla.
    * Muscle Tremors/Twitching (especially at the solar plexus when I yawn) - due to deficiency of dopamine and acetylcholine
    * Occassional numbing of arms and legs.
    * Nasal allergy (especially at night)
    * Dry and irritable skin and eyes
    * Gland swelling around the neck
    * Increased smegma secretion on face and hair
    * Persistent back pains

Symptoms used to last from 3-4 days when I was younger and well rested. Now that I'm married and need to work for over 9 hours per day (which means I tire myself much more), they can extend to as far as 7-9 days becoming much more intense in comparison to the past, making my life a complete nightmare... It is like you become a zombie: your whole organism collapses in multiple unbearable and frustrating ways. In times, it totally ruins my social life / personal development. Even though I have limited the frequency of intercourse to once per week, most of the times it's not enough for complete recovery and symptoms mound and pile up (meaning new symptoms add up to previous not fully recovered condition). This results to a chronic condition: some symptoms persist more and are almost always there (although in a subtler form) - they only subside if I abstain from sex for over 2 weeks (which at least for me is *very* hard). Usually the 3rd day after orgasm is the worst (when organism strives for serious replenishment), where all symptoms reach their peak and migraine is almost certain to occur.  Throughout these years I have discovered that that symptom intensity is definately proportional to the intensity of orgasm & amount of lost semen + the amount of time that has elapsed since the previous ejaculation.

And some history: Unfortunately for me, I began masturbation as early as 6-7 years old (soon afterwards I began experiencing visual snow). However, If I exclude only small periods at my teens, I never masturbated as frequently as daily or many times per day. The usual pattern was 2-3 times / week max. I'm uncertain whether this was enough for me to suffer such severe drainage or there is some inherent gene / dna defect at work here (which might be common for most of us). I tend to conclude towards the latter.

My wife happens to be a biologist and by reading the kind of substances some of you guys take, she went berzerk: "Substances like DHEA are really heavy stuff. If they aren't sure what they're doing, they might be imparing their organism in various ways". I'm really hesitant to fill my body with dopamine, testosterone, serotonin, melatonin, DHEA, GABA, Acetylcholine and the rest, in fear of causing further irrecoverable damage to my health due to unknown side effects of mixing all these things together. Has it really worked for you? Has any doctor told you it is safe enough? For the time being the only non-medicine treatment that has visible for me is combination of celibacy, good diet and sleep. However I need a normal sexual life like most of the people, without having to wait for entire weeks... it's like a vice circle of torture: experience orgasm and you'll suffer...try to abstain and you'll suffer again.

Thank you very much for your patience. Any questions are more than welcome.

[Dean93]

Although the information gathered in these 200+ thread pages is invaluable, the webmasters should really consider organising it a bit better. Lots of info is buried in an endless frustrating pile of posts...it's nearly impossible to read everything in a row unless I bookmark each time the last page where I stopped reading.

I'd like to add that an easy way to get around the thread (if you know what page that you want to go to) is to divide the page that you want to go by 4 and typing that number into the URL after "6576." Add zeros to make make the number 4 digits long and omit decimal points. If you really want to be precise, you can subtract 25 from the last two digits. Otherwise you can just skip that step, and go back one back, as without it you will be taken a page ahead of the page that you wanted.

[lauracostis]

spermatogenesis:

after ejaculation, or when sperm levels fall below 20 million, "activin" stimulates the hormone "FSH" which starts sperm production.  when sperm levels reach desired amount by testis, inhibin is released shutting off "fsh".  its possible that either fsh or activin may be responsible for pois symptoms.  activin and fsh are both  proteins, so they could be the most likely culprit if the auto immune system is the problem.  the more O's you have the greater the sperm deficit, and the more activin and fsh you will have in your system.  as sperm count gradually rises activin will start to taper off, and inhibin will start taking over and block release of "fsh".  there will always be small amounts of activin in your system because sperm storage life in testis is about 90 days, after that they are destroyed and need to be replaced.  in a 24 hour period (without ejaculation)small amounts of activin and fsh are released to replace 1/90th of sperm.  this could be the reason why we never totally recover from pois.



Activin and inhibin are two closely related protein complexes that have opposing biological effects. Activin enhances FSH biosynthesis and secretion,Many other functions have been found to be exerted by activin, including roles in cell proliferation, differentiation, apoptosis,[1] metabolism, homeostasis, immune response, wound repair,[2] and endocrine function. Conversely inhibin down regulates FSH synthesis and inhibits FSH secretion.[3]

[Defsync]

spermatogenesis:

after ejaculation, or when sperm levels fall below 20 million, "activin" stimulates the hormone "FSH" which starts sperm production.  when sperm levels reach desired amount by testis, inhibin is released shutting off "fsh".  its possible that either fsh or activin may be responsible for pois symptoms.  activin and fsh are both  proteins, so they could be the most likely culprit if the auto immune system is the problem.  the more O's you have the greater the sperm deficit, and the more activin and fsh you will have in your system.  as sperm count gradually rises activin will start to taper off, and inhibin will start taking over and block release of "fsh".  there will always be small amounts of activin in your system because sperm storage life in testis is about 90 days, after that they are destroyed and need to be replaced.  in a 24 hour period (without ejaculation)small amounts of activin and fsh are released to replace 1/90th of sperm.  this could be the reason why we never totally recover from pois.

FOr me the POIS exists from the "feel-good" sensation of an O, whether ejac occurs or not. Interesting ideas though.

[John21 (OP)]

Devastated,

Welcome to the forum.

I'm really hesitant to fill my body with dopamine, testosterone, serotonin, melatonin, DHEA, GABA, Acetylcholine and the rest, in fear of causing further irrecoverable damage to my health due to unknown side effects of mixing all these things together

I second that notion. I dabble with supplements that I have researched and consider safe but taking substances that the body produces such as melatonin and DHEA sounds very questionable to me. Hormonal supplementation should only be taken as prescribed by a qualified doctor IMO.  I agree that the information could be presented better, and I think some of our members are working on a website with POIS summary info. If I were you I would simply glean through the pages and only zero in on topics that interest you, or simply search for that info. I hope you find something useful here, even if it is only our support.

[demografx]

Although the information gathered in these 200+ thread pages is invaluable, the webmasters should really consider organising it a bit better.

We're trying. Below are some baby steps we've taken towards improving the organization of our 5,000+ posts.

Your command of English is superb. Did you study the language elsewhere?

devastated, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/poiswebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address and I'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum for over 2 years, which has attracted over 150 POIS sufferers worldwide who have posted here, plus more than 350,000 page visits. Not bad for a rare malady!

[demografx]

devastatated, this post might help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

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

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

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

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

sometimes I feel similar symptoms to a much less lesser degree from time to time, even with no O. For example if some hottie walks by and my mind wanders a bit too much- no O but it seems to activate some process regardless.

In my case, I have had excessive physical/mental/emotional reactions to jet lag (I rarely fly any more), and alcohol (I quit). Does anything else besides NHS (new hottie syndrome []) affect you?

[CertainlyPOIS]

Has any body put more thought into this chemo brain thing, their symptoms match to closely with pois.  and the way the patients describe their situation it resembles to much of what we are going through. 
    When i looked at science daily it talked about different activity in brain.

The PET scans show a link between chemo-brain symptoms and lower metabolism in a key region of the frontal cortex," explained Silverman, a member of UCLA's Jonsson Comprehensive Cancer Center. "We found that the lower the patient's resting brain metabolism rate was, the more difficulty she had performing the memory test."

The scans revealed that blood flow to the frontal cortex and cerebellum spiked as the chemotherapy patients performed the memory tests, indicating a rapid jump in these brain regions' activity level.

"The same area of the frontal lobe that showed lower resting metabolism displayed a substantial leap in activity when the patients were performing the memory exercise," said Silverman. "In effect, these women's brains were working harder than the control subjects' to recall the same information."

Finally, the researchers discovered that women who underwent hormonal therapy in addition to chemotherapy displayed changes to their basal ganglia, a part of the brain that works to bridge thought and action. On average, these women showed an 8 percent drop in resting metabolism in this brain region.

[CertainlyPOIS]

report on using claritin.

I used it  an hour before orgasm and also used it the next day without any noticeble results. 

[demografx]

spermatogenesis:

after ejaculation, or when sperm levels fall below 20 million, "activin" stimulates the hormone "FSH" which starts sperm production.  when sperm levels reach desired amount by testis, inhibin is released shutting off "fsh".  its possible that either fsh or activin may be responsible for pois symptoms.  activin and fsh are both  proteins, so they could be the most likely culprit if the auto immune system is the problem.  the more O's you have the greater the sperm deficit, and the more activin and fsh you will have in your system.  as sperm count gradually rises activin will start to taper off, and inhibin will start taking over and block release of "fsh".  there will always be small amounts of activin in your system because sperm storage life in testis is about 90 days, after that they are destroyed and need to be replaced.  in a 24 hour period (without ejaculation)small amounts of activin and fsh are released to replace 1/90th of sperm.  this could be the reason why we never totally recover from pois.



Activin and inhibin are two closely related protein complexes that have opposing biological effects. Activin enhances FSH biosynthesis and secretion,Many other functions have been found to be exerted by activin, including roles in cell proliferation, differentiation, apoptosis,[1] metabolism, homeostasis, immune response, wound repair,[2] and endocrine function. Conversely inhibin down regulates FSH synthesis and inhibits FSH secretion.[3]

I like this. I have felt strongly for some time that my POIS has been associated with "sperm regeneration": When I'm feeling "empty" of semen, POIS ravages. When I'm "full", I feel great.

Testosterone therapy has sped up my regeneration, cutting back my devastating symptoms from 4 days to 1.

This, of course, needs empirical verification.

Anyone: any more ideas on how to get outside researchers to study us and POIS?

[GoingCrazy]

For the infection idea, i do find myself in a better mood after being in a sauna for 5-10 minutes.  I'm not "cured" or anything, it is just a definite positive reaction though.  Sauna's are supposed to help rejuvenate the body and help with chronic infections.

[GoingCrazy]

Has any body put more thought into this chemo brain thing, their symptoms match to closely with pois.  and the way the patients describe their situation it resembles to much of what we are going through. 
    When i looked at science daily it talked about different activity in brain.

The PET scans show a link between chemo-brain symptoms and lower metabolism in a key region of the frontal cortex," explained Silverman, a member of UCLA's Jonsson Comprehensive Cancer Center. "We found that the lower the patient's resting brain metabolism rate was, the more difficulty she had performing the memory test."

The scans revealed that blood flow to the frontal cortex and cerebellum spiked as the chemotherapy patients performed the memory tests, indicating a rapid jump in these brain regions' activity level.

"The same area of the frontal lobe that showed lower resting metabolism displayed a substantial leap in activity when the patients were performing the memory exercise," said Silverman. "In effect, these women's brains were working harder than the control subjects' to recall the same information."

Finally, the researchers discovered that women who underwent hormonal therapy in addition to chemotherapy displayed changes to their basal ganglia, a part of the brain that works to bridge thought and action. On average, these women showed an 8 percent drop in resting metabolism in this brain region.

I'm trying to find your post but i am just too impatient now, I believe it had something to do with cytokines?  Maybe.  For me POIS happenned after a terrible 2 years of coffee caused stress.  Stress that I've never dealt with before in my life.  Maybe this causes orgasm to release more cytokines.  I am not sure, we need some concrete evidence.  Is there anything you can take to test this idea?

[demografx]

Question to all:

If you had your pick of an individual(s) or an institution, who would you like to see study us and POIS?

If you'd prefer to PM me with a reply that's fine, as is a casual post.

Thanks!

[mellivora]

As I posted about a month ago, I had some blood tests a while back. These tests were not done while I was feeling symptoms. I still think I need to do a before and after test. I have an endocrinologist appointment at the end of October.
Basically my results for Testosterone, Prolactin, FSH, SHBG, Cortisol and thyroid were all normal. My LH was 'slightly low' - I wonder if that's just something to do with a relatively low frequency of orgasm compared to a normal non-sufferer.

I'd like to see the actual numbers to see where within 'normal' range I was and also to check exactly which testosterone test was carried out (I asked for total, free, bioavailable). I should be able to discuss all this at my endocrinology appointment. Also I think its important to do both before  symptoms and during POIS symptoms tests so hopefully my endo will help me with this.

Trying cranberries. has anyone had any apparent results from dried cranberries? They seem to be easier to get hold of