Women with Post Orgasmic Illness Syndrome

[demografx]

abdul, welcome to the forum!

[Muon]

"I have been to every doctor there is and most just look at me like I have two heads or something"

I've got a question for the two-headed woman. Where is the pain of the headache located? Is it focal or is it evenly distributed throughout the whole brain? Is it constant throughout the day, fluctuating, throbbing? How do you sleep with this? With other words what are the dynamics?

[nanna1]

I've got a question for the two-headed woman. Where is the pain of the headache location?...

A two headed person will have a splitting headache!

[Muon]

I've got a question for the two-headed woman. Where is the pain of the headache location?...

A two headed person will have a splitting headache!

Hahahah

[Muon]

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. I do not sleep well when it is like this. I am very aware of my head the whole time as it feels injured. Normally I sleep like a rock. After a few days of this my headache moves into a more classic headache where it's just painful like a really bad headache. Oddly enough I welcome that because I know I'm out of the first stage and will be better in a few more days. I have to say though since starting testosterone I am not experiencing these kind of severe headaches.  My hormone doctor is being extremely conservative with my medication and I'm not to happy about that.  My testosterone level is still only testing at 4. She has me on such a light dose. I'm going to see my OBGYN on Thursday to discuss my hormone levels with her.

https://poiscenter.com/forums/index.php?topic=2755.msg36770#msg36770

[Muon]

https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.  After intercourse, I would feel nauseous, dizzy, stuffy nose, sneezing.  This lasts for 4-6 hours.  I thought I was going crazy.  I read somewhere that taking Benadryl 30 minutes before intimacy would help, and it does, but just a bit.  Sure would like to find out more info. on this subject for women."

https://en.wikipedia.org/wiki/Combined_oral_contraceptive_pill#Formulations

https://en.wikipedia.org/wiki/Birth_control_pill_formulations

[Muon]

Mallory:

"I exercise frequently but get a similar headache only when I go running for some reason.. minus the flu symptoms though."

lovelife28:

"I also get the same kind of headaches after a high paced workout."

Effects of endurance exercise on serum concentration of calcitonin gene-related peptide (CGRP): a potential link between exercise intensity and headache

https://poiscenter.com/forums/index.php?topic=2885.msg37012#msg37012

[Muon]

Right, but if I've been tracking mediators for instance, and I don't know what on earth is going on and antihistamines don't seem to be helping very much, then at least I want to make sure that I'm not missing something that might be correctable. Also, if someone has a lot of headaches and all of these patients are miserable because of the headaches and migraines, I will measure the molecule called CGRP, calcitonin gene related peptide. Not only is it a very strong trigger of mast cells, but as of a few months ago, there is now a CGRP receptor antagonist for prophylaxis of migraines

Ref

[Muon]

Crosslinking from the MCAS thread, https://poiscenter.com/forums/index.php?topic=2301.msg35429#msg35429 :

Mallory:

"I am so glad to have found this... .trust me you are not the only woman with this problem!  I am 27 and have been experiencing the very same problem for the last few years.  During and immediately after orgasm, from intercourse or masturbation, I get  body and joint aches, neck stiffness, throbbing headache and nausea. This also happens when I perform oral sex on my husband, that does not result in an orgasm on my end.   It's the worst for several hours but the flu like symptoms will last for days. I have been gluten and dairy free for 4 years now, so it isn't allergies.  I have recently been diagnosed with fibromyalgia  and a tentative  MS dx, but still need a spinal tap.  Do you have any other illness, nerve pain, or odd symptoms..... do you get the same feeling with intense exercise?  I exercise frequently but get a similar headache only when I go running for some reason.. minus the flu symptoms though.  I have a normal body weight and BMI, and have normal blood pressure and blood work.  My doc has be taking 400 mg of riboflavin daily, which is apparently for migraines, although I never really get headaches at any other time"

Oral sex: Non-IgE mediated activation of mucosal mast cells?
Fibromyalgia: Often comorbid with MCAD
Multisystem symptoms and odd symptoms induced by triggers: Typical MCAD
Exercise: potential mast cell trigger

Many women have CFS on the TNS forum which is also often seen comorbid with MCAD.

I wonder if desensitization with diluted ejaculate from men works for her case.

Edit: Btw about CGRP and headaches from the previous posts and this one. Atopic dermatitis:

"In conclusion, SP and CGRP but not VIP fibres were more frequent in lesional than in nonlesional papillary dermis of both AD and NE. Since mast cells are also increased in number in lesions of AD and NE, they are able to maintain neurogenic inflammation through activation by SP and CGRP. The increased SP/CGRP nerves in the epidermis of AD and NE lesions may stimulate keratinocytes to release cytokines which affect various cell types enhancing inflammation."

Mast cells, nerves and neuropeptides in atopic dermatitis and nummular eczema

Edit 2: Substance P can induce nausea. https://en.wikipedia.org/wiki/Substance_P

"SP is a trigger for nausea and emesis"

Conclusion: We could be dealing with the neuropeptides SP and CGRP (or increased SP/CGRP nerves) , both are mast cell triggers. In addition SP is a MC mediator and MC autocrine trigger. 

[Muon]

Dumping this here, it emphasizes females: Serotonin and CGRP in Migraine

Some women here report a short time of stimulation before reaching O. Also some depression. This could indicate low serotonin.
Many show low vitamin D which is involved in the regulation of serotonin: Vitamin D hormone regulates serotonin synthesis. Part 1: relevance for autism

Low serotonin and high CGRP in migraines of females, influenced by estrogen.

"There is no doubt that serotonin and CGRP levels in neuronal tissues are affected by physiological hormonal intervention specifically the estrogen making women predisposed to migraine."

Heather got chronic high estrogen and headache. Her burning phase before classical headache could indicate involvement of neuropeptides (which ones?).

"Similarly, cessation of intake of birth control pills, produce headaches due to fall in serotonin levels. Furthermore, if sudden decreases in estrogen can precipitate attacks then chronic high estrogen levels can also increase the likelihood of migraine. In fact, the varying levels of estrogen are the main culprit rather than the drop in estrogen."

Giggly developed POIS after cessation of birth control pills.

"The malfunctioning in the modulation of the pain signal in the periaquaductal grey (PAG) in midbrain was thought to be an underlying mechanism for migraine attack."

This area is activated in men not in women during orgasm:
Anatomy and Physiology of Erection, Ejaculation, and Orgasm

"While these are similar between genders, in men there is additional activation in the periaqueductal gray matter."

Switching to men again: " He  initially presented for a “strong dysphoric status after intercourse”,  during  the  last  months  before his  visit,  “aggravating  each  time,  from  ab-dominal   pain   and   nausea   to   generalized sickness”, to which obnubilation, confusion and severe migraine were added." (Stafie, 2019)

Haven't read the full paper about migraines yet, saw SP and P/Q type calcium channels being discussed. We need a researcher to look at these female cases and compare them to men.

[demografx]

Dumping this here, it emphasizes females...

At this time, do you feel that female data relates to male POIS?

[Muon]

Female with POIS new here, possible POIS also triggered by stress and exercise

takedrugstoletgo:

"Hi all,

I recently came across POIS. I have had issues with depression and anxiety for a long time which only happen after orgasm or stress (including exercise). My symptoms are: generalized pain, poor stamina and sluggishness after orgasm, muscle weakness, flu like symptoms (runny nose/headache) night sweats, bad mood/temper, general depression and sadness after sex, hair loss.

I first managed it with Dextroamphetamine which is used for ADHD but now not even that helps and i will feel like crap for up to 10 days after sex or stressful days and exercise. I also have severe heat sensitivity after sex and feel like crap for a long time after with very little motivation. I tend to get severe sugar cravings alcohol cravings in POIS and feel extremely tired and weak. I also look awful, very puffy and my face looks kind of deformed and have cold hands and feet. I get diarrhea sometimes too during POIS.

Just came up with a new plan to try and heal myself which include water fasting, cold showers, low intensity exercise (walking mainly) and i stopped eating carbs. My doctor prescribed propranolol (beta blocker) and Xanax. I also stopped caffeine but that hasn't helped much yet.

Hoping to learn more here and wish everyone good look with trying to cure POIS. Will be active on forum as much as i can. I have a week off of work now and plan on water fasting all week."

Dumping this here, it emphasizes females...

At this time, do you feel that female data relates to male POIS?

Some of them do show similar patterns in symptomatology yes, see above for example. In the end researchers have to figure this out.

[demografx]

Dumping this here, it emphasizes females...

At this time, do you feel that female data relates to male POIS?

Some of them do show similar patterns in symptomatology yes, see above for example. In the end researchers have to figure this out.

Thanks, Muon!

[Muon]

https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.  After intercourse, I would feel nauseous, dizzy, stuffy nose, sneezing.  This lasts for 4-6 hours.  I thought I was going crazy.  I read somewhere that taking Benadryl 30 minutes before intimacy would help, and it does, but just a bit.  Sure would like to find out more info. on this subject for women."

https://en.wikipedia.org/wiki/Combined_oral_contraceptive_pill#Formulations

https://en.wikipedia.org/wiki/Birth_control_pill_formulations

See second paper treatment: https://poiscenter.com/forums/index.php?topic=3551.0

"Norethisterone, also known as norethindrone and sold under many brand names, is a progestin medication used in birth control pills," https://en.wikipedia.org/wiki/Norethisterone

I think she did not develop POIS at that age but surpressed it by the use of birth control pills all along. 20+ years means age <33 years. My aunt's symptoms got worse at age ~30 according to my mother, she (and my mother) also felt better during pregnancy which is when progesteron rises. Now benadryl helps Giggly which could indicate mast cell involvement. Stimulation of the progesteron receptor on mast cells inhibts the mast cell. Inhibition of mast cells means that you only inhibit a certain subset of mediators. This can differ from person to person meaning different receptors need to be adressed for different meta-patterns. If my aunt's case has a genetic origin then norethisterone might work for me.

[Muon]

My aunt's symptoms got worse at age ~30 according to my mother, she (and my mother) also felt better during pregnancy which is when progesteron rises.

"The systemic increased size of the CD4+CD25+ Treg population during pregnancy may underlie the gestational alleviation of some autoimmune diseases; these diseases often relapse after birth in mice and humans"

Progesterone Increases Systemic and Local Uterine Proportions of CD4+CD25+ Treg Cells during Midterm Pregnancy in Mice

Membrane progesterone receptors in human regulatory T cells: a reality in pregnancy

Which is what happened, they relapsed after birth. Temporary alleviation during pregnancy.

Two poisers who tried progesterone (P4)/norethisterone felt worse, they also expressed low Testosterone levels (Heather and Demo). T can expand Treg numbers just like IL-2. Norethisterone can elevate SHBG depending on dose and thus lower free T, so these folks may feel bad.

TRT:
Androgen receptor modulates Foxp3 expression in CD4+CD25+Foxp3+ regulatory T-cells

But the half-life of Tregs is in the order of days I believe. The effect should persist some time.

[Muon]

Mallory:

"During and immediately after orgasm, from intercourse or masturbation, I get  body and joint aches, neck stiffness, throbbing headache and nausea. This also happens when I perform oral sex on my husband, that does not result in an orgasm on my end.   It's the worst for several hours but the flu like symptoms will last for days."

These two scenarios are leading to similar symptoms:

1) Orgasm from masturbation
2) Oral sex without having an orgasm on her end

Sounds like an 'abnormal' endogenous process due to orgasm that can be triggered by an exogenous substance, in this case semen.

Concentrations and significance of cytokines and other immunologic factors in semen of healthy fertile men

Discussion of semen content:
Manifestations of immune tolerance in the human female reproductive tract

From the first paper about high concentrations:

"High concentrations of IgG and IgA were detected in all samples. IgG concentrations were significantly higher than IgA concentrations (P < 0.0001). Likewise, two multifunctional growth factors, transforming growth factor-b1 and interleukin (IL)-7, and three chemokines, stromal cell-derived factor-1a, monocyte chemotactic/chemoattractant protein-1 and IL-8, were present in high concentrations in all samples (medians >1000 pg/ml)."

"TGF-a1 is present in extremely high concentrations in human seminal plasma. Seminal plasma contains more active TGF-a1 (1 ng/ml) than do other body fluids including blood plasma and breast milk"

Switching to men for a moment:
"TGF-a1 is thought to be synthesized in latent (inactive) form primarily in the prostate; following ejaculation, seminal TGF-a1 may be converted to its active form in the female tract by the acidic vaginal pH, or enzymes found in seminal plasma."
Ejaculation activates these growth factors whatever that means.

From second paper:

"Human seminal plasma contains very high concentrations of prostaglandins when compared to other bodily secretions. It is now apparent that PGE2, 19-hydroxyprostaglandin E1 and 19-hydroxyprostaglandin E2 are the three major prostaglandins in human seminal plasma, each being present in millimolar concentrations. Since these lipid mediators often manifest their effects in the uM to nM concentration range, virtually all pathways that are affected by these lipids are operating under saturating conditions in human semen."

[nanna1]

...Sounds like an 'abnormal' endogenous process due to orgasm that can be triggered by an exogenous substance, in this case semen...

...From second paper:
"Human seminal plasma contains very high concentrations of prostaglandins when compared to other bodily secretions. It is now apparent that PGE2, 19-hydroxyprostaglandin E1 and 19-hydroxyprostaglandin E2 are the three major prostaglandins in human seminal plasma, each being present in millimolar concentrations..."

I think it's the prostaglandins in the semen that cause this. Or it could be caused by the polyamines (spermine, spermidine).

[Muon]

Or it could be caused by the polyamines (spermine, spermidine).

Food contains polyamines. I wonder whether the food sensitivies seen in POISers could be related to defects in polyamine metabolism.

Polyamines in Food

Polyamines in Gut Inflammation and Allergy

[Muon]

Or it could be caused by the polyamines (spermine, spermidine).

Metabolic and Epigenomic Regulation of Th17/Treg Balance by the Polyamine Pathway

Sam-e plays a role as well.

[Muon]

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/

My mother has IBS, I wonder if she's the one who carries the "POIS gene" in our family if this turns out to be indeed genetic. It would be great if researchers could indeed pinpoint a gene that causes this, but with how little research is being done...

https://scholar.google.com/scholar?hl=nl&as_sdt=0%2C5&q=IBS+genetics&btnG=