IronFeather's case (female, 25 years old)

[IronFeather]

I'm not so sure I believe that a semen allergy could be the underlying cause of POIS…

Me, neither!

Do you believe, then, that it could have something to do with the refractory period, as in, something gets depleted and the body is sick until the levels of that substance of hormone are restored? There's a refractory period for neurons, too, and it involves the depolarization of the neuron's membrane via closing of the Na+ channels... Just an idea, but sodium is present here, and also in bleach, the substance that damaged me so badly. Maybe there's a connection.

[demografx]

Do you believe…that [POIS] could have something to do with the refractory period…

Always have.

[IronFeather]

I was reading this highly interesting study when I recalled this post and thought this could be of interest to you and others.

Hyperalgesia is a cardinal symptom of opioid withdrawal. The transient receptor potential vanilloid 1 (TRPV1) is a ligand-gated ion channel expressed on sensory neurons responding to noxious heat, protons, and chemical stimuli such as capsaicin. TRPV1 can be inhibited via mu-opioid receptor (MOR)-mediated reduced activity of adenylyl cyclases (ACs) and decreased cyclic adenosine monophosphate (cAMP) levels. In contrast, opioid withdrawal following chronic activation of MOR uncovers AC superactivation and subsequent increases in cAMP and protein kinase A (PKA) activity.
The cAMP-PKA pathway is important in pain sensitization induced by opioid withdrawal in the central nervous system. Such cAMP superactivation was found to increase synaptic as well as glutamatergic presynaptic transmission in brainstem neurons.
Moreover, enhanced PKA activity has been shown to increase neuronal action potential rate leading to hyperexcitation of midbrain neurons during opioid withdrawal.
https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/S0304395913000110

Hmm, this is really interesting. I feel pain much more intensely during POIS than in a normal state, but I always believed it happened because of a generalized inflammatory response, that might affect the nerves or their sensitivity. I wonder if there is also something going on with receptors in the nerve fibers and/or brain. This theory seems to be supported by my muscle shaking, that can't come from the muscles themselves, as there's apparently nothing wrong with them. I'm planning on getting some test done soon to measure this shaking and find out if there's nerve damage, but I'll have to find a good doctor first.

When I'm out of POIS I'm not too sensitive to pain, in fact I'm quite masochistic actually. I think I'm addicted to the endorphin rush that pain causes, which is probably the reason why I loved sports and strength training so much.

[demografx]

Do you believe…that [POIS] could have something to do with the refractory period…

Always have.

In my case, I believe refractory sluggishness is the culprit. Recently, my CPAP machine has improved my POIS enormously (and joyously!) I believe my newfound energy is speeding up the refractory process - - along with my TRT treatment.

But - - as Quantum indicates - - let’s wait a few months before declaring success.

[IronFeather]

Yes, I've heard that deep breathing is very stabilising for the nervous system, and heart beat. its also oxygenationg the body.

I also experience the "balloon" feeling inside the head (in POIS) which feels like there is a very unpleasant pressure behind the nose, deep in the brain. I also believe it might originate from the pituitary/hypothalamus. I've made a poll about signs of decrease pituitary/hypothalamus function. My hypothesis is that an inflamed pituitary/hypothalamus is causing many of the POIS symptoms.

Exactly, that is what it feels like for me too. Since there seems to be a connection between POIS and stress (as in, stress worsens POIS for most people), and the hypothalamus links the nervous and endocrine systems by way of the pituitary gland, it does seem likely that something isn't working properly here. Plus, the hypothalamus is the part of the brain that regulates temperature and heart rate, and both parameters are normally altered during POIS. But if there's something wrong with the hypothalamus, that's a serious thing, I hope it's just being influenced by some other imbalance in the body.

Deficiencies of any these hormones is a sign of compromised function in the pituitary and hypothalamus:

Adrenocorticotrophic hormone (ACTH) (targets the Adrenals)
Thyroid-stimulating hormone (TSH) (targets the Thyroid, temperature controlling, heart rate)
Luteinising hormone (LH) (targets the testes)
Follicle-stimulating hormone (FSH) (targets the testes)
Prolactin (PRL)
Growth hormone (GH) (Stimulates growth and repair)
Melanocyte-stimulating hormone (MSH)
Antidiuretic hormone (ADH) (Controls the blood fluid and mineral levels in the body by affecting water retention by the kidneys. This hormone is also known vasopressin or argenine vasopressin (AVP)). Deficiency leads to dryeness, low blood pressure and varicose veins.
Oxytocin (anabolic hormone that heals osteoporosis)
Corticotropin-releasing hormone (helps regulate metabolism and immune response by working with the pituitary gland and adrenal gland to release certain steroids)
Gonadotropin-releasing hormone (instructs the pituitary gland to release more hormones that keep the sexual organs working)
Prolactin-controlling hormones
Thyrotropin-releasing hormone (activates the thyroid, which releases the hormones that regulate metabolism, energy levels, and developmental growth)

Thank you for all this info! I'm on the lookout for things to measure in blood tests, so I'll add these to my list and see if I can manage to measure any of them.

It's interesting that you mention the antidiuretic hormone (ADH), because most of the time, during POIS, I'm very thirsty but can't stop urinating all the time, it seems like I lose more water than the amount I'm drinking.

You can answer the poll here. And please do my other polls listed in my personal history here.

Done! As the polls are anonymous, I'll add my answers here too, with a bit more information:

• Do you have LIPOMAS?

No, I've never had them.

• Do you experience hypothalamus deficiency symptoms?

The symptoms from this list that I've experienced, and only during POIS episodes, are: feeling irritable, mood swings, weight loss, disturbances in vision, hair loss, and headache (this one happens very rarely in my case, and is most likely related to dehydration).

• Is your cortisol high or low?

Normal: 19.0 micrograms/dL (6.7-22.6 being the normal range). I only measured it once though, and I was not experiencing POIS symptoms at the time.

• What is the rise in your HR between lying down and after standing up?

I only experienced this symptom while we were using bleach at home, even though I clearly have lasting damage. At its worst, it was around 20-25 BPM. Now it almost doesn't change.

• How does your stool (poop) change during POIS?

During my first years with POIS, I often had diarrhea during my episodes. Now, when there is a change, it's towards constipation. My personal opinion on this is that the nerve fibers that control bowel movements are affected.

• Do you have any of those symptoms assosiated with EDS (Ehlers-Danlos syndrom)?

Very easy bruising of the skin. Fatigue only happens during POIS.

• Are you the youngest sibling?

I'm an only child. However I don't think it matters much.

• What's your normal blood pressure (SYS/DIA)?

I don't remember the numbers, but doctors always say they are "textbook values".

• Do you experience dryness during a period of POIS?

Less saliva (dry mouth). I always feel like I need to double my water intake during POIS (metabolism speeds up?).

• Do you have kidney problems?

No, not at all.

• How many hours on average a day, do you spend staring at a computer screen?

It depends. I almost didn't use computers until I was 17, and even now I try to stay away from phones, screens and radiation in general as much as possible. But during some periods, especially before exams, I've spent as much as 8 hours working on my laptop. Now it's usually around 1-2 hours per day, but still, some days I don't use computers at all, and I don't use a smartphone anymore.

• Do you have Small Intestinal Bacterial Overgrowth (SIBO)?

I can't be sure, but I don't think so. I usually eat a lot, I eat a varied diet (but all organic), and don't have any stomach or intestinal problems.

• Whats the duration of your POIS symptoms?

It ranges from 5 to 15 days, but usually a week.

Does anyone have any idea of exactly what substance released from the brain that is the cause of the instant headache that comes seconds after orgasm?

I don't think it's a particular substance, apparently "sex headaches" are relatively common but the causes can vary from person to person and they are more common in people already suffering from migraines. According to this site, they can be caused by an intracranial aneurysm, or inflammation, or medications... I personally don't experience this at all.

[BoneBroth]

Thanks for your answers!

Since the "ballon headache" (witch for me could be very unbearable) is the very first noticable thing that happens, I think the cause of POIS-symptoms is situated in this area - the hypothalamus/pitutary that gets inflamed and decreases its activity during the POIS-days (thats when you get dry skin etcetera).

However, this doesn't nessecarily mean that the area is unrepairable damaged. On the contary - it seems to be restoring itself completely between the POIS episodes! And at occations that I associate with non-stress (vacations, sun, relaxing, beeing away from people I dont like, and together with those I do like) I seem to have a much greater POIS resistance, or it could even be gone! ...just to appear again when I'm "back at the desk".

This make me think that there is something else messing with the hormones and that the cause of POIS might be related to stress or bad absorption of nutrients in the upper intestine (leaky gut/sibo/Chrons/IBS) catalyzed by frequent orgasm. Orgasms consumes alot of hormons so the building block is not added in the same pace as they are consumed. Thats why some members do well on eating eggs, or egg yolks, that contain building material for hormons, particularly cholesterol.

[Progecitor]

I wonder whether your exercise intolerance may stem from the brain. Could your breathing problem in the past, during hot weather (had this myself), be linked to the middle of the brain? Is a certain section of your brain underperforming?
https://poiscenter.com/forums/index.php?topic=2545.msg42629#msg42629

I've been thinking about this a lot, but I'm not really sure. When my symptoms worsened last year after using bleach at home, I felt a weird sensation in the middle of my head all the time (for 7-8 months), something I'd never experienced before and that felt as if a balloon was sitting in the middle of my brain. When this feeling intensified I felt dizzy or nauseous, in fact, I started feeling slightly dizzy some weeks before the exercise intolerance appeared, it was the first symptoms that alerted me that something was happening. However, I wonder if it's really in the brain of if it's actually the pituitary gland. I've been suspecting for a long time that there's something wrong with the hypothalamus-pituitary-adrenal gland axis, and that the involvement of the adrenal glands might be the reason why stress is much more detrimental for us than for healthy people.

The reason why I first thought about the pituitary is because, every time I feel this strange sensation of not being able to breathe properly, something in the back of my nose swells, so noticeably that my voice changes as it would with a stuffy nose, and my family always comments on it. I wonder if it's the pituitary gland malfunctioning or being overstimulated for some reason. Also, not sure if I've said this before, but when I was 17 years old I suddenly developed a very heightened sense of smell, that has remained very sharp ever since (for example, I can tell when a bottle of water has been exposed to sunlight because the water smells differently, I can smell what my neighbor is cooking 30 meters away with the windows closed, and recently I realized I can tell if a house uses electricity or gas to heat the water because it smells different...).

Maybe something isn't working properly in the nervous system, and this caused your temporary lack of tension in facial muscles, as well as the involuntary shaking we both get when tensing a muscle? (I think you said you had this too). In my case, I hadn't ever experienced this before my worsening, it appeared at the same time than my exercise intolerance, so I believe it must be related.

Another addendum:
The olfactory system has been shown to be altered by both deficiency and excess of steroids, especially glucocorticoids. The authors reported that in patients with adrenal insufficiency, there is a marked increase in the ability to detect odorants, while in patients with adrenal hypersecretion (Cushing's syndrome), there is a decrease or absence of the ability to detect odorants.
https://www2.helsinki.fi/sites/default/files/atoms/files/ezeh_et_al_1991._steroids_and_odor_detection_dog.pdf

Although you had a normal cortisol level you may still need to consider the involvement of aldosterone.
https://en.wikipedia.org/wiki/Addison%27s_disease
https://en.wikipedia.org/wiki/Aldosterone

[Muon]

I would go for a test similar as this one IF: https://poiscenter.com/forums/index.php?topic=4048.0

[BoneBroth]

Last week I found the best source of adrenal fatigue ever at the site of drlamcoaching.com. This guy seems to be spot on everything about bad adrenals and has loads of articles about it. My printer almost got POIS by printing everything out.

[berlin1984]

I advise you to collect the lubricating fluid secreted by vagina, then inject it into your body. .
(edit)You could work with a doctor to check if a desensitation therapy makes sense.(/edit)
 All of the men in China who are undergoing semen desenz have slight sympotoms if they inject the diluted semen into their body. So I believe POIS is caused by semen or prostatic fluid or anything else allergy instead of a kind of neuropathy

For reference, Lihua's thread: https://poiscenter.com/forums/index.php?topic=4104

[Lihua]

I advise you to collect the lubricating fluid secreted by vagina, then inject it into your body. .
(edit)You could work with a doctor to check if a desensitation therapy makes sense.(/edit)
 All of the men in China who are undergoing semen desenz have slight sympotoms if they inject the diluted semen into their body. So I believe POIS is caused by semen or prostatic fluid or anything else allergy instead of a kind of neuropathy

For reference, Lihua's thread: https://poiscenter.com/forums/index.php?topic=4104

I am sorry that I am not good at English so I used the wrong word. I mean, do a skin-prick test under the inspection of your doctor, which is relatively safe.

[Hopeoneday]

Hi Iron, what i forgot to ask you.. when you do high visual sexual
arousall , than lubricating fluids is start to producing, do you
feel eny inflamation or pain i yours reproductive organs?
Do you get eny pois symptomes from that or you need
"OF" to start pois cascade and symptomes?

For exemple i did some testings, visuall arousall on porpes for 20 min,
no masturbation , no ejac... in mans, lubricating fluids in cowpers
glands is starting to produce, olsou prostate and seminal vesicles
start producing semen products.. and after this i feell
inflamation around glands sometimes and slight pain..
and this will give me 30-50 % pois symptomes withouth "OF",
i am not always get pain in glands but this will hapen after
longer period of sexual abstinence on perpos.

[kakaw112]

Yes, I've heard that deep breathing is very stabilising for the nervous system, and heart beat. its also oxygenationg the body.

I also experience the "ballon" feeling inside the head (in POIS) witch feels like there is a very unpleasant pressure behind the nose, deep in the brain. I also believe it might originate from the pitutary/hypothalamus. I've made a poll about signs of decrease pitutary/hypothalamus function. My hypothesis is that a inflamed pitutary/hypothalamus is causing many of the POIS symptoms.

You can answer the poll here.And please do my other polls listed in my personal history here.

Does anyone have any idea of exactly what substance released from the brain that is the cause of the instant headache that comes seconds after orgasm?

Can a MRI prove the changes before and after an O ? Pardon me if its already performed, I am not very updated with POIS Scan results

[Muon]

Niacin

even though it didn't help my POIS, it completely eliminates my period pain. I used to feel pain so severe that I could barely move, for the first 5-6 hours of my period, every month. Taking one niacin pill makes it completely disappear! No idea why, but it's a life changer

[Muon]

I spent 4 months with colitis and lost half of my weight until thankfully my mother deduced that soy was the culprit. So I believe that, if it was a true allergy, I'd have had a more intense reaction. And yes, I've never tolerated soy well, and I've had that problem for as long as I can remember.

"Thus, specific IL-10 deletion of Foxp3+ Tregs results in spontaneous colitis, highlighting the fact that IL-10 produced by Tregs is instrumental in maintaining tolerance particularly at intestinal tissues"

"This protective role is most probably lost during colitis onset, since several lines of evidence indicate that dopamine levels decrease upon intestinal inflammation; and under these conditions, low dopamine levels may stimulate both the innate and adaptive compartments to produce highly inflammatory cytokines, favoring the development of colitis."

[kid_]

@Ironfeather

Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?

[IronFeather]

@Ironfeather

Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?

It's interesting that you mention sauerkraut, because I used to love it as a kid and ate it regularly, but now it gives me diarrhea. No idea why or when this started, I realized it five years ago (before my worsening and the appearance of exercise intolerance), and all I know is that it's the same reaction I have to taking vitamin C and pollen. All three are things I used to take regularly as a kid and they gave me no issues, but now I get horrible cramps and explosive diarrhea if I eat them even once.

After a long time in the sun I feel the same way than after a long warm bath, not dizzy but more tired, especially with less strenght in the muscles and a tired/burning sensation in them when I move. I think my blood pressure lowers, but I would have to measure it to be sure. I never take showers, I'm too ticklish and hate the feeling of all those little water springs on my skin, but I usually use quite hot water when I take a bath and it does make some random parts of my skin itch sometimes (and I get very red if I scratch it even lightly, as if a tiger had scratched me). What really does get itchy almost every time is my face after washing it, whether the water is warm or cold. But I also have really bad acne since my POIS started, so that might explain something.

[kid_]

@Ironfeather

Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?

It's interesting that you mention sauerkraut, because I used to love it as a kid and ate it regularly, but now it gives me diarrhea. No idea why or when this started, I realized it five years ago (before my worsening and the appearance of exercise intolerance), and all I know is that it's the same reaction I have to taking vitamin C and pollen. All three are things I used to take regularly as a kid and they gave me no issues, but now I get horrible cramps and explosive diarrhea if I eat them even once.

After a long time in the sun I feel the same way than after a long warm bath, not dizzy but more tired, especially with less strenght in the muscles and a tired/burning sensation in them when I move. I think my blood pressure lowers, but I would have to measure it to be sure. I never take showers, I'm too ticklish and hate the feeling of all those little water springs on my skin, but I usually use quite hot water when I take a bath and it does make some random parts of my skin itch sometimes (and I get very red if I scratch it even lightly, as if a tiger had scratched me). What really does get itchy almost every time is my face after washing it, whether the water is warm or cold. But I also have really bad acne since my POIS started, so that might explain something.

What you describe is 90% similar to my symptoms (and everyone elses with MCAS) to these foods/activities..
Intestinal problems with fermented foods and dermatological problems/sensitivity/redness with heat is very typical for mast cell diseases..
Probable that you don't notice it in the sun because you live in spain and are used to lots of sun exposure.
With your exercise intolerance ... do you get dizzy/weak and does your skin itch or sting? Did you also get insomnia after the sauerkraut or did you sleep normal 8h?

[IronFeather]

What you describe is 90% similar to my symptoms (and everyone elses with MCAS) to these foods/activities..
Intestinal problems with fermented foods and dermatological problems/sensitivity/redness with heat is very typical for mast cell diseases..
Probable that you don't notice it in the sun because you live in spain and are used to lots of sun exposure.
With your exercise intolerance ... do you get dizzy/weak and does your skin itch or sting? Did you also get insomnia after the sauerkraut or did you sleep normal 8h?

Personally, I've never completely believed that POIS is due to MCAS, but I do see there are a lot of similarities and it makes me think that the immune system is indeed involved in this condition somehow. I wonder if it's vitamin C specifically that makes my intestines react, since both sauerkraut and pollen are high in it. MCAS seems a bit different from what I have, because I have never experienced skin symptoms like itching, redness or rashes during POIS. Same with irritation of the nose and eyes, or trouble breathing... those aren't symptoms I have. I do experience the typical air hunger feeling that people with POIS almost always report, but it doesn't correlate with low oxygen levels or constriction of the airways, it seems to be a phantom sensation and I have no idea what causes it. It isn't anxiety either, and it worsens a lot a few hours after exercise. When it's present, my vision also seems different, as if my surroundings were brighter, especially at night. I believe my pupils dilate for some reason but I'm not sure of this, it's just a hypothesis (some sort of parasympathetic nervous system activation in response to an excessive sympathetic activity?).

Don't people with MCAS usually react to foods that are high in histamine and that's the reason why they have an adverse reaction to fermented foods? I eat eggplants, avocados and spinach regularly, sometimes in really big quantities (especially eggplants, which I love), and never get any problems from them.

I've been trying to update this thread for some time, there is new info I need to add about all this, as I've experimented with new supplements and my symptoms have stabilized in a different way. I'm working on writing the update right now, hopefully I'll finish it this week.

About your last question, I don't get dizzy or weak during exercise, and my skin doesn't itch or sting, at least not that I've noticed. What happens is that I can't maintain any sustained muscled tension, my muscles shake wildly, some more than others but in any case it's very noticeable (my friends can't believe it when they see it and joke all the time asking me if I'm connected to a power outlet or calling me electric girl), and afterwards I experience high fever and episodes of tachycardia for days. It's not a matter of strength, I don't feel weaker than before (apart from the logical amount of strength that I've lost after not exercising for two years) and this shaking doesn't happen when exerting maximum force, it happens all the time when I tense any muscle. However, my muscles feel like they were made of rubber after any effort, no matter how moderate, almost as if I couldn't feel them anymore, and the shaking intensifies incredibly. I wonder if there is a circulation problem or a metabolic one at play here.

After eating sauerkraut I slept normally. The only things that affect my quality of sleep are POIS episodes and vitamin B supplements (I don't know yet which of them is the culprit, as I haven't taken them all separately, but it's not B3/niacin). Both make it difficult to fall asleep (I might take half an hour or even an hour, again I suspect sympathetic nervous system activation), make me feel very tired in the morning, and turn a normal night of sleep into endless hours of tossing and turning, asleep but aware of feeling uncomfortable and cold, with episodes of tachycardia around 3-4 in the morning, experiencing extrasystoles when I lay face up, and usually with that horrible air hunger feeling that even wakes me up sometimes. Wrapping up in a lot of blankets until I feel very warm usually makes the worst of these symptoms lessen or even disappear (circulation issue?).

[Hopeoneday]

If mcas is involved in us (probbly it is),
there are no man with mcas that hawe
the same symptomes.