This forum is really quiet. How many active members are we?

[POISed2cure]

This forum seems really quiet. I wonder if there are only a handful of people suffering from POIS badly enough to seek help, and how much of POIS is almost entirely psychological. Sure, the body may take a hit and knock us out cold, but how our minds can turn that into a 'condition', which then becomes a focal point every time we orgasm, and the whole idea of it can build up and take us over... It certainly feels real to us given the severity of it, but then how do we explain the placebo effect many of us get when we try new treatment options? Perhaps some that have 'success' with a certain treatment, the continued belief in it is actually what makes it effective rather than the actual drug/vitamin itself. 😂 Not necessarily a bad thing, just an interesting thought. The power of the mind. You read stories of serious POIS sufferers with the worst of symptoms and out of nowhere they are 'cured'. I remember one member had a sudden realisation and "called BS" on his POIS and that day he was cured. Another member with Wim Hof breathing - and I don't question the power of breathing or meditation (quite the opposite) but to suffer *that* badly, and then magically have success every single time. Actually I am not surprised by the impact of breathing meditation or 'awakening', but there are those who eat a random berry, or G-d knows what else, and that does it for them. 🤷

There may be a significant factor at play in many, if not most of our cases - which is identification with a condition, and that identification in and of itself becomes a self-fulfilling prophecy. The first doctor I ever saw (in Australia), when I told him I always get a headache the next morning, his reaction was, "sure, you're expecting that to happen with such certainty and that unconscious expectation, worry, and anxiety, can easily become the actual cause of the migraine (plus all my other cognitive symptoms). Placebo effect is enormous, ranging from between 15-75% depending on a range of factors (according to an article in 'Psychologytoday'), which tells you the power of mind. Unfortunately there's no profit in placebo, so it's the last thing to be explored by both doctor and patient.

I hope members are open-minded to such ideas... Many people with all sorts of conditions find 'magical' cures. Sometimes, the desperation to believe, or total surrender to any treatment option, is, the magic pill... 🙃

[Hopeoneday]

The power of mind is wery powerfull tooll(eg autosugestion),
there are documented cases of peoples cured theirs
cancers with autosugestion.

There are no costs for you to say F pois, bs-pois,
and you are free from pois 

[POISed2cure]

 

[Charles_b]

This forum seems really quiet. I wonder if there are only a handful of people suffering from POIS badly enough to seek help, and how much of POIS is almost entirely psychological. Sure, the body may take a hit and knock us out cold, but how our minds can turn that into a 'condition', which then becomes a focal point every time we orgasm, and the whole idea of it can build up and take us over... It certainly feels real to us given the severity of it, but then how do we explain the placebo effect many of us get when we try new treatment options? Perhaps some that have 'success' with a certain treatment, the continued belief in it is actually what makes it effective rather than the actual drug/vitamin itself. ? Not necessarily a bad thing, just an interesting thought. The power of the mind. You read stories of serious POIS sufferers with the worst of symptoms and out of nowhere they are 'cured'. I remember one member had a sudden realisation and "called BS" on his POIS and that day he was cured. Another member with Wim Hof breathing - and I don't question the power of breathing or meditation (quite the opposite) but to suffer *that* badly, and then magically have success every single time. Actually I am not surprised by the impact of breathing meditation or 'awakening', but there are those who eat a random berry, or G-d knows what else, and that does it for them. ?

There may be a significant factor at play in many, if not most of our cases - which is identification with a condition, and that identification in and of itself becomes a self-fulfilling prophecy. The first doctor I ever saw (in Australia), when I told him I always get a headache the next morning, his reaction was, "sure, you're expecting that to happen with such certainty and that unconscious expectation, worry, and anxiety, can easily become the actual cause of the migraine (plus all my other cognitive symptoms). Placebo effect is enormous, ranging from between 15-75% depending on a range of factors (according to an article in 'Psychologytoday'), which tells you the power of mind. Unfortunately there's no profit in placebo, so it's the last thing to be explored by both doctor and patient.

I hope members are open-minded to such ideas... Many people with all sorts of conditions find 'magical' cures. Sometimes, the desperation to believe, or total surrender to any treatment option, is, the magic pill... ?

Yeah, not really agreeing with this.  I was taking Pepto Bismol as an adjunct for treating h pylori and didn’t expect any relief from it, and didn’t even think of it in terms of POIS.  I then noticed all of my symptoms were gone with high and sustained levels of it over several days - I repeated the experiment weeks later just to see if it was indeed that.  Wasn’t a placebo because I didn’t take it to fix anything or have any expectations.  I had tried dozens of other prescriptions and supplements hoping for relief but none worked (no placebo).

So folks could have one of two reactions to that:
1.) knee-jerk reaction “lulz sure lets all just take antacids, it’s all in your head”. 

Note: that first example isn’t directed at you, that was literally the first response I got in this forum when I mentioned it helped me.

OR

2.) A nuanced approach like my doctor who said “well Pepto inhibits prostaglandins via the cox2 pathway which would calm immune system inflammation, let’s look there”.

As mentioned the only other thing that has worked for me is aged garlic extract out of many, many tries, which also has an immune modulating response… according to scientific studies.

As a note when I am in POIS, glands in my neck get large and painful like when I am ill, and again, my doctor confirmed that and noted that along with the extreme fatigue and cavalcade of other symptoms it sure lined up with an immune response.

I’m pretty sure I’m not making my glands swell by overthinking it .

[Aladin]

I don't have that impression....

[Charles_b]

Also it gets a bit exhausting and frustrating that every couple of months, like clockwork, someone pops into the forum and tells everyone that it is all in their head and/or anything that helps us placebo, and sometimes  that therapy would somehow cure our issues.

It is similar to CFS sufferers who for years and years were told it was in their head, or they were just depressed and lazy, or maybe more yoga would help, or to just go see a shrink.

Well, when scientists looked at brain imaging there are fundamental physiological differences between the CFS brain and everyone else, including blood flow issues in the brain… so a legitimate medical issue that lots of folks had discounted and even gaslighted those who were suffering from it.

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02506-6

“The frequent observation of additional brain area recruitment and consistent observation of sluggish fMRI signal response suggest abnormal neurovascular coupling in ME/CFS”.

[POISed2cure]

Didn't mean to sound like 'one of those' you mention above, saying it's always "in your head". I didn't mean that and understand the frustration of being told this. I am one of the worst POIS sufferers here, and it feels extremely real to me too! But I have had several treatments in the past that have given me full relief for a period. These came at times of relative stability, calm and peace in my life, and I wonder if that is a coincidence... Xanax (once a month) and propranolol are the only things that mask my POIS symptoms after all these years, and I try not to abuse them, but it is unbearable.
I don't doubt there may be different factors at play in SOME cases, such as having abnormally low testosterone levels, hypogonadism, etc... Personally I feel I fall into this category, but I have an unusually undeveloped physique.

But the longer you are active in this forum, the more you read about short-lived 'cures' from random vitamins, foods, drugs, and one wonders... To what degree the mind plays in all of this. That's all i'm saying. It certainly feels real as hell to me. But I also wonder if focusing on the condition and treatment ALONE is approaching it the correct way... Perhaps the issue is 'spiritual' in the sense that we are living our daily lives in such a way that is totally incompatible with our true self, and perhaps after orgasm when our immune systems are weaker, it exposes the difficulties of living up to these pretentious 'roles' and keeping up the act. Materialism, the means of acquiring wealth, the way we relate to and judge people, have become the primary focus in society these days for most people, which is why we see skyrocketing cases of depression, anxiety, and mental illness. We've been fed a KFC for the soul. Seeking happiness in places where happiness cannot be found. People are not living in harmony with their deeper selves, which often includes not listening to their bodies in terms of nutrition, exercise, and actions. Any of these things being out of balance can create serious imbalances. Many of us are living up to some conditioned idea of ourselves, how we were educated to believe certain things, to live and behave. But most of it is totally phony. If we were born 100+ years ago we easily could have been educated to believe owning slaves was normal. We still prize wealth over kindness. So yes, perhaps our bodies have slight 'weaknesses' compared to others, but by failing to address the deeper deficiency in our lives, of connection, love, oneness, and so on, we may be focusing on the symptoms, rather than the root cause.... Just a thought. Nothing more. No need to be offended. We're battling this together.

[Charles_b]

I appreciate the additional context.  Also I was not offended, and even used the word “frustrated” in the second post, just to share my disposition on this. 

It seemed reminiscent of another poster in here who pops in every once couple of weeks to tell us it’s all pent up emotions and trauma, and therapy would fix us completely… I think many of us have heard too often people suspecting it is a psychosomatic issue, similar to what is said about CFS, and I think it is important to challenge that.

For context this is what I was keying off of:  your quote below along with the later anecdote mentioning your doctor said it was a self fulfilling prophecy to have symptoms each time, certainly seemed to ascribe a portion, if not all, to POIS being psychological rather than physiological:

“I wonder if there are only a handful of people suffering from POIS badly enough to seek help, and how much of POIS is almost entirely psychological.”

I appreciate the follow up though, as that adds an important additional dimension to your original sentiments.

[hapl]

I guess I'm less interested in the cause and more interested in the cure.

I don't necessarily believe in the 'placebo effect' being the answer to everything. Possibly things work short term because they change a pathway, then your body's strong push toward homeostasis 'corrects' back to the broken pathway. Possibly why the longer you have symptoms the harder it is to cure (with pretty much any disorder).

That said, I've been willing to consider some kind of mental connection. I don't think there's much risk to trying meditation or various neural retraining programs or breathing exercises. I have found zero help from meditation or the neural retraining, and some minimal help from breathing exercises (doesn't change my POIS or CFS-like symptoms, though).

So for me, only really interested in what I can try and whether it helps me. If it doesn't help me, then it's not useful for me no matter how much someone swears it's the answer. What I like about the forum is collecting various protocols that work for different people. Both Quantum and Nanna1 have protocols that have improved my POIS by maybe 20%-30%, but I can't get better than that so far.

[hurray]

One factor to consider is that forum members who consider themselves "cured" have no real motivation to post here any more.

[BoneBroth]

One factor to consider is that forum members who consider themselves "cured" have no real motivation to post here any more.

Or those who are so ill that they do not have the energy to write.

[Progecitor]

One factor to consider is that forum members who consider themselves "cured" have no real motivation to post here any more.

Or those who are so ill that they do not have the energy to write.

I agree!

[FernandoPOIS]

There is a worldwide epidemic of low dopamine.

Add to that:
Sedentary lifestyle
Upregulation of endorphin/dopamine receptors by excessive pornography.
Unfavorable genetics (lack of muscle mass)
Chronic back pain problems.
Allergies in many from childhood to those of today.
Foods rich in carbohydrates (because they are more accessible and easier to digest).

The main factor that leads a man to have POIS is physical and emotional weakness.
As long as there is no drastic change in lifestyle and way of looking at life, antihistamines, painkillers and stimulants will continue to be the best option to control these terrible symptoms.

[berlin1984]

There is a worldwide epidemic of low dopamine.

Thanks to TikTok? :-)

(Note: I hate TikTok and similar, but i'm definitely a news (textual) addict)

[FernandoPOIS]

I was talking about dopamine issues related to sexual function, stimulation, those things, but there's also the issue of social media addictions that act to generate the same issues.

Thanks to TikTok? :-)

(Note: I hate TikTok and similar, but i'm definitely a news (textual) addict)
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