Women with Post Orgasmic Illness Syndrome

[IronFeather]

I used to be sick pretty often too, which I later found out was caused by a food intolerance (a very bad one, almost an allergy) to soy.

https://www.celiac.com/articles.html/gluten-and-cross-reactive-foods-r4903/

To follow up on this, maybe this long episode I had could damage the gut bacteria or throw it out of balance, causing problems in the development or functioning of the vagus nerve?

[Muon]

To follow up on this, maybe this long episode I had could damage the gut bacteria or throw it out of balance, causing problems in the development or functioning of the vagus nerve?

Or the core problem lies within the GI tract. The vagus nerve may try to counter microbiome shifts. The adjustments made by the VN may be accompanied by inflammation, the inflammation is there to fight something but could damage the host as well in the process. Gut problems affect the brain as well and can lower serotonin leading to an equivalent of male premature ejaculation. Gut-brain axis.

[Muon]

Yes many had improvement on gluten-free (+diary free) diets despite negative coeliac/gluten sensitivity tests. I will post something in the thread for women.

That's interesting, I wonder if some gut dysbiosis is indeed at play. The vagus nerve is greatly regulated by gut bacteria, this could be something... right before I developed POIS (a year before or so), I had 4 months of constant diarrhea due to a soy intolerance that I hadn't yet identified, maybe this could influence the development of the vagus nerve in a negative way somehow? Hmm...

I wish I could participate in the POIS study, but I can't travel to the US for that

I told her they excluded women from the study:

Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less? Does it affect something that is very developed in men and much less developed in women, like prostatic tissue, testosterone...? Or could it only affect women with some typically-male characteristics? I wonder.

I agree, it's stupid. It's far more prevalent in men plus women are speaking less about it, especially on a male dominant forum. Men are more prone to infection and women to autoimmune disease. Also, I gave another reason for this somewhere in this thread which is mast cell related. In men there is additional activation upon orgasm within a certain area of the brain that isn't happening in women. That area could be of interest for research.

[berlin1984]

Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less?

In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing..

[IronFeather]

In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing..

Hmm, chronic fatigue syndrome? I doubt it, at least in my case. Maybe POIS can cause CFS, I could believe that, since I've developed symptoms that match CFS, but that only happened this year and I've had POIS for 12 years already. And it happened as a result of exposure to bleach, I had a terrible reaction for some reason and developed exercise intolerance. I think I should add that story to this thread, I'll do it in another post.

But before that... I've always had an immense amount of energy, and I used to train martial arts and calisthenics, always jumping from one activity to another. It doesn't seem possible to me that POIS could be CFS in my case at all.

Anyway, maybe I have it now? Who knows. When I was exposed to bleach I had episodes of complete lack of strength and total depletion of energy, even lifting a spoon was an effort. But now I feel fine, even when I'm left with exercise intolerance... (and I would give almost anything for it to disappear).

[Hopeoneday]

Hi IronFeather.
I hawe (big in pois) hi chemical intolerances, parfumes etc...
I remeber as a teeneger wehen i cleaned moldy in room with bleach ,
that did give me lungs colapsing reaction, cant tolerate it for one second.

My mother is obsessed with cleaning, and for years I did have to convincing her to
 that she "poisoning me, us" in house with all those chemicals.
Now she use more natural cleaners and less chemicals.

When i am in full blown pois mode, brochoconstriction in thouse mode,
put bealch fumes on that, uffffffff, disaster.

Autosugestion and newer giwe up mode(fighting mode) keep me in life.

Cfs , exsercise intolerance is my big isue and life destroyer.
Small dose coffe help a lot.
Taurine one two grams help.
Zma , zink magnesium help.
Try some b complex vitamines.
C vitamine help.
Check yours vitamine D.
Some high quality multivitamine...
Check yours diet eg food intolerances...

Did you checked yours thyroid?

[Muon]

I've had blood tests done multiple times during my worst fever episodes, and everything comes back normal except for very low levels of iron (I usually have normal or even high iron and hemoglobin levels), and through-the-roof amounts of C-reactive protein. This led doctors to think I could have mononucleosis or some kind of bacterial infection, but all specific tests came back negative. They put me on antibiotics anyway, and that solved most symptoms almost immediately and made me able to get out of bed and finally get better during the worst episode I've ever had. That's why I've always thought it must be some kind of infection by some pathogen, even when I used to believe an autoinmune reaction must be the cause. Now I don't even know what to believe or what to do.

Intracellular iron regulation, infections and the effect of LPS endotoxins

"Withholding iron from potential pathogens is a host defense strategy."

"As alluded to earlier, iron is essential for the survival and growth of almost all organisms. Furthermore, an important strategy of mammalian antimicrobial defense is based on depriving pathogens of this essential nutrient"

[Hopeoneday]

https://poiscenter.com/forums/index.php?topic=2788.msg25238#msg25238

[Muon]

Perhaps the most relevant aspect of the neuroregulatory aspects of gonadal steroids in neurosomatic disorers is that “estradiol enhances and testosterone attenuates novelty stress-stimulated increases in c-Fos mRNA in the hippocampus, with presumed consequent alterations in the transcription regulatory effects of c-Fos” (Roca CA et al., 1999).

Hi guys! I missed a post from earlier above with some questions. Sorry about that.  Before POIS yes I always had an extremely high libido. More than any boyfriend or husband I ever had. Although since it started making me feel so bad sex is the last thing I want to do.

I'm somewhat always stressed due to running my own business and taking care of my family.

I have done 3 hormone tests over the last year. All were when I was not symptomatic. All showed very high estrogen and non-existent testosterone. I will be happy to upload those here if that's possible.

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I have been experiencing this for about 4 or 5 years now and the symptoms have gotten considerably progressive worse over time.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Antihistamines, Serotonin supplements (which ones?) and NSAIDs did not work for her. However TRT works. She felt awful on progesterone.

Well I don't have 2 heads (thank God because headaches on 1 head is enough!!!) But I am one that gets severe headaches after sex.  It is all over my head. It is not in one spot. In the past it would start out like my head felt deprived of oxygen or something and was very dull achey brain foggy confused feeling. It almost felt as if my brain was burning.

Endothelin release--->vasoconstriction? Cerebral hypoperfusion? Hypoxia?
https://poiscenter.com/forums/index.php?topic=2545.msg38274#msg38274

https://en.wikipedia.org/wiki/C-Fos
"It is involved in important cellular events, including cell proliferation, differentiation and survival; genes associated with hypoxia"

"It plays an important role in many cellular functions and has been found to be overexpressed in a variety of cancers."

15) My two grandmothers died from breast cancer, and one of my grandfathers died of prostate cancer, but apart from that, the only health problems I can think of in my family are the endless digestive problems of my mother. She's been diagnosed with irritable bowel syndrome and lactose intolerance, but her troubles only appeared after the emotional turmoil of her relationship with my physically abusive father, so that might explain her issues.

Also seen in MCAS: https://poiscenter.com/forums/index.php?topic=2755.msg32997#msg32997
Argument of MCA can also be made in case of Heather's high estrogen which is a potent mast cell activator.

[Muon]

Ironfeather could prevent her symptoms from getting worse by exercise. It is known that BDNF increases during exercise. Does she have low (serum) BDNF just like my brother?

[Iwillbeatthis]

Ironfeather could prevent her symptoms from getting worse by exercise. It is known that BDNF increases during exercise. Does she have low (serum) BDNF just like my brother?

Agmatine sulfate increases BDNF and eNOS, I ordered some and it came today so I will test it out

[Muon]

Antihistamines, Serotonin supplements (which ones?) and NSAIDs did not work for her. However TRT works. She felt awful on progesterone.

https://forums.phoenixrising.me/threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/page-6#post-582561

Ketamine antagonism? I wonder whether viagra will work for her symptoms (brain feels deprived of oxygen, collapsing blood vessels?).

Agmatine sulfate increases BDNF and eNOS, I ordered some and it came today so I will test it out

https://en.wikipedia.org/wiki/Agmatine#Mechanisms_of_action

[demografx]

Muon, I love your technical graphics!

[Muon]

Dopa responsive headache: Restless head syndrome or a cephalic variant of restless legs syndrome?

Headache and restless legs syndrome responded to levodopa. Does TRT therapy helps Heather because it affects dopamine somehow (or MCs)? Low T is a risk factor for endothelial dysfunction. Endothelium might not respond properly to orgasm. Low Dopamine levels? Or slow conversion to norepi? Or norepi repsonse is exaggerated?

[Muon]

That is interesting. When I was a child I was prescribed 20 days of penicillin injection, is it considered over-prescription?

What was the reason for the prescription?

[Muon]

Timestamp 16:19 POIS discussion: https://youtu.be/rFiehQLjPpk?t=979

Timestamp 43:32 potential POIS extension study in women?: https://youtu.be/rFiehQLjPpk?t=2612

[Muon]

I also have thalassemia minor.

"Due to its immunomodulatory,[17] iron chelating and antioxidant properties, this herb has the potential to be used in beta-thalassemia patients who receive regular blood transfusions and suffer from iron overload" https://en.wikipedia.org/wiki/Silibinin

https://en.wikipedia.org/wiki/Thalassemia#Beta-thalassemia

"Infection: People with thalassemia have an increased risk of infection."

Males are more susceptible to infection compared to women...except when there is an underlying condition.

[Iwillbeatthis]

I remeber as a teeneger wehen i cleaned moldy in room with bleach ,
that did give me lungs colapsing reaction, cant tolerate it for one second.

My mother is obsessed with cleaning, and for years I did have to convincing her to
 that she "poisoning me, us" in house with all those chemicals.
Now she use more natural cleaners and less chemicals.

I had a bit of black mold on the edges of my bedroom windows between the glass and window frames, I've been meaning to clean it for ages but you need to kill mold with white vinegar, hydrogen peroxide. If you use bleach it doesn't kill the roots of the mold and actually releases dangerous mold spores into the air. I still have a bigger mold problem in my ensuite bathroom but I have stopped using that bathroom for months now because of it until its sorted.

Let's see if it has any effect on how I feel when I wake up in the mornings. Every morning I have to clear my throat of phlegm and sometimes it has blood in it, can also have brain fog and more rarely allergies.

If it doesn't then it must be to do with what I'm eating for dinner.

When I saw the functional medicine practitioner at the start of last year he thought I had mold toxicity based on my symptoms. He put me on a protocol for mold toxicity with binders like bentonite, charcoal and liposomal glutathione for detox. It was definitely needed for a month to start functioning properly again ,I felt ill and had brain fog all the time before but this protocol had no effect on my POIS or reactions to showers. Bentonite was probably the best thing from it which I still use from time to time, it can bind to yeast, heavy metals, mold in the gut. My stools improved a lot.

[Muon]

I'm in the middle of exams again and things are stressful. I don't even understand my own symptoms anymore. I used to take vitamins B and never had any problem with them, and now, after the bleach exposure, I can't tolerate them, they give me POIS symptoms - plus a killer headache and insomnia. And it seems that my main symptom, fever, is gone, I never get it anymore, not even after an orgasm.

Recognition and Management of Medication Excipient Reactivity in Patients With Mast Cell Activation Syndrome
"After starting college, he reported increasing headaches and insomnia, and he wanted to resume nortriptyline, which he took in the past with improvement in these symptoms"

It's probably the stress that makes you susceptible to new potential triggers. What I observed over the years for my own case, is that, stress is relatively strong at lowering the threshold for reactivity to other triggers and amplifies ongoing reactions.

Perhaps fever went away after the exposure to bleach? Did something happen to the methylation cycle regarding reactions to B vitamins?

[Muon]

Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less?

In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing..

Mono--->CFS--->CFS went away---> stuck with POIS.
Age 25: Mono
Age 25-27: CFS
Age 27-29 and beyond: POIS but no CFS
https://www.thenakedscientists.com/forum/index.php?topic=14697.msg344849#msg344849

Something happened between the disappearance of CFS and onset of POIS. Some modulation.
Infection of vagus nerve? Could the latter modulated the microbial composition of the GI tract leading to an altered immune response upon orgasm?