Mast Cell Activation Syndrome

[Nas]

If POIS is mast cell mediated or a manifestation of MCAS you would expect to see these patients show up at doctors treating mast cell diseases as well. So I have sent Dr. Theoharides an email and asked him if he encounters MCAS patients who are responding to sexual triggers (orgasm, arousal etc). He confirmed this with a 'Yes'.

Are there any poisers living in or close to New York (USA)? Leading expert in mast cell activation syndrome Dr. Afrin treats MCAS patients in New York at Armonk Integrative Medicine. http://www.armonkmed.com/about/dr-afrin/

Perhaps a bunch of POIS patients could try to visit him. Anyone?

I also have talked with MCAS patients who react with sexual triggers. But the symptoms are generally typical MCAS, which usually involves anaphylaxis. What we need is MCAS sufferers who have similar symptoms to us. Also the usual treatment of anti-histamines seems to work for these people while it wouldn't for us.

[Hopeoneday]

I can see a big pecentage of poisers who helped by antihistamines. This ilnes is multy systemic,
and need multysaystemic aproach, like MC patients the same,
I hawe 90% symptomes of anaphylaxsis.

[Muon]

In short, i want to understand why does my body react so differently to orgasm following sex versus masturbation?...

  There are two reason given in the POIS literature for a difference between POIS from sex versus masturbation. The first reason comes from the paper:

  Progesterone deficiency, "Benign coital headache relieved by partner's pregnancies with implications for future treatment" (Selwyn Dexter, 2009)

  In this paper, they conclude that the male POIS patient benefited from his wife's progesterone (exchange of sexual bodily fluids). They tested this by giving the man a progesterone mimicking drug which relieved his POIS 95 percent.
  The second reason is given by the paper:

Mu-opioid receptor dysfunction, "Postorgasmic Illness Syndrome (POIS) in a Chinese Man: No Proof for IgE‐Mediated Allergy to Semen" (Jia Yin, et al, 2015)

  In this paper, they suggest that low beta-endorphin stimulation is the reason that POIS occurs. Beta-endorphin blocks some of the negative (immune suppressing) properties of norepinephrine, epinephrine and prostaglandin PGE₂ (see post). Social interaction (especially with the opposite sex) can increase endorphin release. Laughter (comedy) is also a major endorphin releaser!

...And why do i have to sleep within 20min or so after sex to avoid POIS?...

  The short answer may be that sleep boost your immune system. The sleep response is the immune system telling your body that it is not strong enough to handle POIS. The first thing that happens during sleep is that epinephrine and norepinephrine levels drop, and melatonin levels increase:

Check this out. If you combine above theory with mast cell activation theory, all three parameters point in the same direction, coincidence?:

Melatonin: Inhibits mast cells (Increased melatonin = improved POIS symptoms)
Progesteron: Inhibits mast cells (Increased progesteron = improved POIS symptoms)
β‐Endorphin: Stimulates mast cells (Increased β‐Endorphin = worsening of POIS symptoms)

Table 1:
Neuroendocrinology of mast cells: Challenges and controversies

NSAIDs cause POIS symptoms for me, notably headaches and brain fog. To each there own.

This could be an indication that the ratio of Leukotriene/prostaglandin production might be skewed towards leukotriene production. A urine test for LTE4 can provide some insight. Some MCAS patients feel better while others feel worse on NSAIDs.
https://youtu.be/82dmZhCBuBo?t=6330

[Limejuice]

Interesting...

[Muon]

Demografx uses benadryl which is an anti-histamine used in mast cell disorders.
Forced sleep improves his POIS symptoms. This can be explained by a raise in melatonin which inhibits mast cells.
Testosterone can induce inhibitory effects on mast cells as well (especially skin MCs), hence the improvement of symptoms by dermal TRT.

He got multisystem symptoms, which are mysterious and non-specific. Mast cells could be responsible for his benign nodules, MCs guide tissue growth.

He also got other triggers like hot showers. Just do an analysis of every symptom from person to person on this board, list those and you will see a lot of similarities with MCAS.

Same thing with IronFeather. She sensitized to some standard changes of parameters in the body as a result of sexual activity. It gets worse over time. Same thing with her soy sensitivity. She was in a sensitization process up to the point of colitis (which is another condition that could be related to mast cell activation disease).

Maybe you're right. I don't know what to think anymore. I'd never heard about mast cell activation disease, but I've looked up some information recently and it seems a bit exaggerated to me, isn't it an illness that's supposed to cause random reactions to various substances, red rashes on the skin, allergy attacks...? Can a person have MCAD and only display symptoms of a sensitivity to a certain substance, and in the case of poisers, to sexual activity? Isn't it a dangerous disease that would have caused us serious problems by now?

Honestly, I'm worried and scared about how this is going to evolve in time. Back when I was a teenager I could never have imagined the magnitude of the symptoms I'm having now, so who know what is yet to come? Does MCAD pose any risk to the brain? That's what terrifies me the most, my entire life revolves around intellectual activities, am I going to lose it all because of a stupid random disease?

The disease (MCAS) can range from very mild (almost unnoticable) to extreme (shock). You can react randomly to various substances or only react consistent to one specific substance. The rashes and allergic attacks have the potential to be involved but they don't necessarily have to occur. Yes you can develop sensitivies to a certain substance, but the overal picture is that patients show multisystem symptoms which are non-specific. Pressure, low ambient temperatures and food are able to induce symptoms in you, which are, not suprisingly, known mast cell triggers. The step up in magnitude of the symptoms is also what you are seeing in MCAS. It is not considered a dangerous disease. Sometimes you can have moments where you think you are dying but you will recover from those (I had these moments myself).

And I have frequency of toilet visit only after orgasm and this condition lasts for almost 24 hours.

Serotonin release from intestinal mast cells?

Muon:
"Does histamine inhibit the mast cell? I'm confused, is this an error? Table 1:"
Neuroendocrinology of mast cells: Challenges and controversies

Dr. Theoharides:
"Histamine could inhibit mast cells via activation of H3 receptors"

[Muon]

Interesting cortisol discussions. I just recently completed CT scans of my adrenal glands, found benign nodules/tumors which might explain my resistance to blood pressure control meds. Under supervision of a nephrologist. I also have high creatinine count. Kidney problems have been a mystery to me.

Communication between mast cells, testosterone and the kidney?:

Testosterone and Mast Cell Interactions in the Development of Kidney Fibrosis after Unilateral Ureteral Obstruction in Rats



https://repository.kulib.kyoto-u.ac.jp/dspace/handle/2433/115281

Not POIS but still posting. I wonder if beta-hexosaminidase mediator release is involved in POIS, perhaps something for research:

Systemic and localized seminal plasma hypersensitivity patients exhibit divergent immunologic characteristics

[demografx]

Interesting, Muon

[Clues]

Muon, what are your thoughts on anti-histamines to alleviate MCAS symptoms? Some say that overuse of anti-histamines can eventually cause the body to produce more histamine. E.g. this interview:

https://healinghistamine.com/dr-janice-joneja-histamine-intolerance-interview-pt2/

[Muon]

Muon, what are your thoughts on anti-histamines to alleviate MCAS symptoms? Some say that overuse of anti-histamines can eventually cause the body to produce more histamine. E.g. this interview:

https://healinghistamine.com/dr-janice-joneja-histamine-intolerance-interview-pt2/

I have never heard of overuse. Patients are going through an exhaustive list of mast cell targeted therapy one by one starting with anti-histamines. MCs can release a wide variety of mediators. If it doesn't secrete histamine then anti-histamines are worthless. The wide range of symptoms seen in poisers could indicate different mediator release profiles from person to person. Plus meds that gave improvement in poisers are often able to interact with mast cells or indirectly counter mediator effects in one way or the other.

A paper has been published including a Mast Cell Mediator Release Syndrome Questionnaire:

Mast Cell Activation Syndrome: A Primer for the Gastroenterologist

[Muon]

I recently posted an article about treatment of idiopathic infertility by the mast cell blocker tranilast (there are more cases in literature):

Appearance of spermatozoon after administration of mast cell blocker to a patient with azoospermia

I just encountered this one on reddit:
https://www.reddit.com/r/POIS/comments/g9lp3y/hello_people_of_reddit_i_hope_youre_all_doing/

YemAli
"My symptoms include:

Intense brain fog.
Aggravated.
Emotionless.
Fever the next 2 days.
Face bloated.
Hand tremors.
Speech errors.
Cognitive difficulties.
Anxiety.
Ears and nose all get stuffed up.
Face & Neck warm.

Was 99.99% Infertile. Didn't know what the reason was. After finding a miracle doctor. I discussed my infertility and my symptoms i have after O. He prescribed to take DeltaCortil 4 hours before O and see what happens. That month, the first time i tried with the medicine, got my wife pregnant. So i went back to my doctor and he then diagnosed me with POIS. Infertility can be linked with this cursed disease. Luckily i got linked with an amazing doctor who saved my life from getting corrupted by this nuisance of a illness."

tyrone737
"So did this medication help your other symptoms or just your infertility?"

YemAli
"Both! It's reduced my symptoms by 70-80 percent. And I achieved pregnancy. Well not i 😜 My wife."

https://www.drugs.com/international/deltacortil.html

Contains Prednisolone which is used in mast cell disorders, see this discussion:

https://poiscenter.com/forums/index.php?topic=3202.msg33995#msg33995

POIS (MC trigger?) --> MC activation ---> MC mediators affecting sperm production?

argumentdesk
"Was there anything else traumatic happening during your teenage years at the same time POIS manifested? (Illness, life stress, toxin exposure, car wreck, abuse, etc)"

YemAli
"No illness. Little stress because i wasn't the most brightest student and studies were tough."

Stress is a trigger in MCAD. There are more poisers on this forum and in literature who had stress before or during the development of POIS. Is there a stress induced change in mast cell phenotype involved in POIS?

[millstone]

Muon,

Thanks for linking these two forums together. I am ArgumentDesk over on Reddit.

I believe the chronic stress / chronic disease / MCAS ties into my overall thoughts on how POIS manifests. I did a full write-up on Reddit a few weeks ago:

https://www.reddit.com/r/POIS/comments/g27a8l/pois_a_unified_theory_of_everything_suggestions/

This is why I was digging in to better understand YemAli's underlying triggers and background, as I do believe chronic stress (whether physical, chemical, or emotional) is the catalyst and foundation for manifesting POIS as a chronic condition (like all other chronic conditions) and ultimately the limbic system is (incorrectly) imprinted with the auto-immune-like instructions to release inflammation / immune response triggered by the rising chemical hormonal changes during arousal / orgasm.

Stress = Mind/Body Imbalance = Dis-ease

The stress leads to downstream gene expression, in particular, modifications that seems to up regulate the mast cell immune response.

[Clues]

Just to add more anecdotal evidence to the stress link, some of the main themes around my personal case are:

* What seems like a mast cell disorder (currently being diagnosed)
* Extensive chronic gut problems (currently greatly alleviated by a MCAD-friendly diet)
* Chronic background stress/anxiety all adult life and possibly before. (Am now 40)
* Severe tension in PSOAS, with related symptoms such as lower-back pain

I'm working on my PSOAS tension, but it's tricky as exercise is a trigger for me. This PSOAS release program feels awesome but leaves me with symptoms the day after:

https://www.youtube.com/watch?v=x2DB_ABQMFg

[Aladin]

the symptoms the day after are normal part of the exercise: i used to have nightmares the night after when i did them at first. The idea is that your body gets rid of the toxines piled up in your psoas muscle. Hence the importance of drinking lots of water afterwards.

[Muon]

Thanks for linking these two forums together. I am ArgumentDesk over on Reddit

Ok Hi, I rarely visit reddit due to the board format btw.

I'm working on my PSOAS tension, but it's tricky as exercise is a trigger for me. This PSOAS release program feels awesome but leaves me with symptoms the day after:

I got spinal issues, I think it's the pressure activating inflammation in sinovial tissue (high temperature, stress and POIS induce similar behaviour). Big chunk of my life problems with back muscles. Prolonged local stress/tension in muscles can ignite an inflammatory cascade in me (I assume it's inflammation). My mother got problems with the PSOAS, not me. I did Fysiotherapy for years but these were not the proper exercises for me. Yes exercise can worsen things while you do need it though, weak muscles are more susceptible to stress. It's a difficult balancing act. The tension must be relieved.

I have never heard of a poiser going through a complete MCAD diagnostic workup as presented in papers by the way. Even when your case is not mast cell related you still may give this questionnaire to your endocrinologist for other patients.
Mast Cell Activation Syndrome: A Primer for the Gastroenterologist

I tried an SSRI for a day.  I experienced a very severe headache (the likes I have never seen), so I stopped.

Same here even on the lowest possible dose. Where inside your head do you feel the pain the most?

That headache I experienced was totally unique.  Extremely heavy, crushing pressure in the middle of my skull.  Maybe there is no relationship...

I had same headache and i dont toletate any serotonergic drug. They cause fogginess and headache

Yes I triggered the same spot by taking citalopram.

SSRIs high risk of mediator release:
Compilation of drugs associated with a high risk of release of mediators from mast cells and their therapeutic alternatives

~90% of brain mast cells are concentrated in the middle of your skull. Not sure where I did get that number from, perhaps it was in this video:
'Brain Allergy' and ASD - T. Theoharides, MD, PhD

In my case high ambient temperature + arousal can trigger a headache in that same spot. These are also potential MC triggers.

[millstone]

Some SSRIs work different from one another in terms of specific receptor-site targeting, as well as elimination half-life.

When prescribed back in February, I tried Lexapro 20mg and felt an immediate terrible reaction within 2 hours.

I switched to Prozac (fluoxetine) 10 mg which has a much longer half-life and is a lower dose. No real side effects for me and it's been great.

Aside from the 'on-label' effect of serotonin reuptake inhibition, SSRI's have been found to catalyze neurogenesis in brain cell recovery, which is likely why they say it takes "4 to 6 weeks to see full effect".

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360216/

For me, POIS reactions led to serious neuro-inflammation and damage, so brain tissue recovery is very welcomed. I now focus on daily supplementation of Fish Oil and Vitamin D to enhance neurogenesis / recovery as well.

As for headaches, the very center of the brain is the limbic system, which is the more ancient "mammalian" brain that controls the sympathetic nervous system (including stress & immune response).

Just stitching concepts for thought... but an immediate headache in the area which controls your stress / immune response may correlate limbic brain function with POIS.

[Clues]

Yes exercise can worsen things while you do need it though, weak muscles are more susceptible to stress. It's a difficult balancing act. The tension must be relieved.

Yeah, I'm working on the balance. It's tricky as I have a wife and an 8-year-old child, and I get a bit grumpy as part of my symptom set. I've done the PSOAS release exercise about 15 times by now, and it feels less tense. But definitely needs more work.

I have never heard of a poiser going through a complete MCAD diagnostic workup as presented in papers by the way. Even when your case is not mast cell related you still may give this questionnaire to your endocrinologist for other patients.

Yeah, about that: My tryptase was normal. My endocrinologist is well-meaning albeit pretty busy, and not quite up-to-date on mast cell disorders. But he seems determined to reach a proper diagnosis and he still suspects a mast cell disorder. He hadn't read the papers I sent him (two of the ones you suggested), but said he would when time allows. The next step is going to a dermatologist at the same specialist centre to do a skin biopsy of some of the infection-like sores I have here and there, which seem to be tied to the overall symptom picture. He did take a quick look at some of the blood tests in the table you mentioned, and said some of them weren't available, but that the University hospital does chromogranin A tests. But he said he'd like to get the biopsy results first.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/table/T6/

[Muon]

Well...good luck reaching a proper diagnosis without a proper diagnostic workup. Factor VIII is another MC mediator that should be available. More mediators inside this thread: https://poiscenter.com/forums/index.php?topic=3236.0

[Clues]

Well...good luck reaching a proper diagnosis without a proper diagnostic workup.

Well, beggars can't be choosers unfortunately. We have an extensive healthcare system over here, but the competency around chronic (and especially rare) disorders seems to be a real wasteland. I've heard from the University hospital that we basically had a single MCAD expert and she retired last year. So I have to work with this guy and see what I can do.

Factor VIII is another MC mediator that should be available. More mediators inside this thread: https://poiscenter.com/forums/index.php?topic=3236.0

Thanks, that's very helpful! Given that the attention span of this guy is stretched, what would you say are the very first things that should be checked? In case he's missing something obvious.

[Muon]

Yes but you are narrowing your chances if you skip most of the diagnostic parameters. Aside from the ones mentioned in the table, the next in line would be the Leukotrienes preferably LTE4 (24h urine). Chromogranin A > Leukotrienes (E4 or C4) > Factor VIII
You want as much mediators tested as possible because these cells can behave in many different ways releasing selective groups.

On top of what was mentioned above; Theoharides proposes this additional selection of serum measurements: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/figure/F1/

Comorbid testing: Scan for osteoporosis and lactulose breathing test (hydrogen+methane, 30% of MCAS patients vs 10% healthy controls test positive)

If stress is triggering you often then VEGF is something to look at. For cardiovascular symptoms one could take a look at PAF.

Secondly a response to mast cell targeted therapy is part of diagnostic criteria, thus therapy is being applied before diagnosis has been established.

[demografx]

The guy needs to do his goddamn job, do a proper investigation or leave it alone, stop with the half-baked stuff.

In our non-medical suggestive roles here (we’re not research or medical professionals), is this strong-armed approach really necessary?