Post Orgasmic Illness Syndrome (P.O.I.S.)
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: Mast Cells Activation Syndrome  ( 9548 )
Quantum
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« : May 11, 2016, 08:20:16 PM »

Hi,

I have found this video most interesting.  It is rather long, and this brilliant lady speaks quite fast and in medical terms, but I suggest you can watch it a small section a day, and pause on the graphics to read the info at your pace:

https://vimeo.com/143033968


This gives a clear picture that the immune system is very, very complicated and implies a lot of pathways and substances, and that, for example, simply blocking one branch, like histamine, may help, but usually is far from complete relief, considering all the other branches that can also be activated by the same initial trigger.

This is not about POIS, obviously, but I still believe that, like Dr Waldinger says, a hypersensitivity reaction is involved in POIS, and this is what this video is about.




You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259
b_jim
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« #1 : May 19, 2016, 03:02:58 AM »

Thanks for the vid.
At 21" minute, she shows a mast cell communication schéma. Can you give the different meditors involved ? (Hitamines and .... ? )

If there is mast cell activation without histamines as dr W said, it necesserly involve these other mediator, isn't it ?

Taurine = Anti-Pois
b_jim
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« #2 : May 19, 2016, 03:06:23 AM »

Other vid from the same author :
https://www.youtube.com/watch?v=ktFdr-9rpIM

Her web site: http://www.drannemaitland.net/index.html
Should we contact her ? :)

Taurine = Anti-Pois
Quantum
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« #3 : May 19, 2016, 08:50:10 PM »

Thanks for the vid.
At 21" minute, she shows a mast cell communication schéma. Can you give the different meditors involved ? (Hitamines and .... ? )

If there is mast cell activation without histamines as dr W said, it necesserly involve these other mediator, isn't it ?

Hi b-jim,

thanks for your comments.

At 21 mins and around, many pro-inflammatory substances, that can be release by mast cells depending of the circumstances, are listed.  Histamine, of course, but also many cytokines and pro-inflammatory mediators, like TNF-alpha, Interleukin-1 ( IL-1), Interleukin-6 ( IL-6), Leukotriene C4 ( LTC4), Granulocyte-macrophage colony-stimulating factor (GM-CSF), CXCL8 ( = IL-8), substance P.  She explains that, depending on what is activating the mast cells and triggers the degranulation, the substances that are released will vary.

In the image at 21 mins, the substances that are shown to act directly on nerve endings are substance P, TNF-alpha, NGF ( Nerve growth factor), Histamine, and tryptase.


Did you noticed the chart at 9:58, showing the possible symptoms of Masts Cells Activation Disorder ?  It sure look a lot like a list of POIS symptoms !


You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259
Quantum
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« #4 : May 20, 2016, 07:48:57 AM »

Thanks for the vid.
At 21" minute, she shows a mast cell communication schéma. Can you give the different meditors involved ? (Hitamines and .... ? )

If there is mast cell activation without histamines as dr W said, it necesserly involve these other mediator, isn't it ?

I forgot to add that I also think that more than histamine is responsible for the cascade of metabolic events producing the many clusters of symptoms that manifest in POIS.  Even if histamine is present and some symptoms can be associated with it, I think that the complexity of the immune system suppose that many other pro-inflammatory mediators are released in addition to histamine.   

So stabilizing the mast cells and prevent them to release pro-inflammatory mediators seems to be a better strategy than just blocking histamine. 

The use of quercetin in then very interesting in POIS, from my point of view, because it acts direclty on the mast cells, stabilizing them and preventing them to release cytokines and other immune messengers, so not only histamine, but the whole arsenal they hold in their granules.  By preventing degranulation ( the process by which they release their immune messengers in our tissues), quercetin or other mast cells stabilizers temper the cytokine storm that is usually seen in a hypersensitivity reaction.  Studies have proven this effect of quercetin ( for example, see http://www.ncbi.nlm.nih.gov/pubmed/22470478 and http://www.ncbi.nlm.nih.gov/pubmed/27187333 )  My personal experience with quercetin is in agreement with this, I get relief from using it, and it is one of the most important "member" of my pre-E pack of supplements.

Chrysin is another bio-flavonoid, which, like quercetin, have mast cells stabilizing properties ( see http://www.ncbi.nlm.nih.gov/pubmed/21515303 ).  I lately found about this one, so I have bought bee propolis, which contains chrysin.  I am at the beginning of my experiment with it, but so far, I tolesrate well bee propolis ( no side effect), and I feel more energized when taking it.  I am slow in my introduction of a new products, because I had bad surprise in the past, so I did not take it yet in the context of a POIS acute phase. 

There is a prescription mast-cell stabilizer  ( montelukast, brand name Singulair), but like I have already mentioned, I have chosen not to use prescription drugs, as long as I can get relief with a stack of natural products.  Keep in mind that drugs are classified "prescription only" because they have at least one potential serious side effect, so yes, they are powerful, but it is always a give and take.  Sometime, this severe side effect is rare and occur in only a small fraction of users, but I do take a very safe approach.... I had enough problems just with POIS itself, so I prefer quercetin, omega-3, flaxseed oil, and the other supplements that are part of the pack I take before E.
« : May 21, 2016, 03:21:41 PM Quantum »

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259
b_jim
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« #5 : May 21, 2016, 02:21:36 PM »

Did you noticed the chart at 9:58, showing the possible symptoms of Masts Cells Activation Disorder ?  It sure look a lot like a list of POIS symptoms !

Yes, absolutely.

Omega 3 never helped me but taurine does.... and I would like to know why .

If you have improvments it's a good thing.
 


Taurine = Anti-Pois
VagSmasher
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« #6 : May 21, 2016, 10:39:27 PM »

Thanks for the vid.
At 21" minute, she shows a mast cell communication schéma. Can you give the different meditors involved ? (Hitamines and .... ? )

If there is mast cell activation without histamines as dr W said, it necesserly involve these other mediator, isn't it ?

I forgot to add that I also think that more than histamine is responsible for the cascade of metabolic events producing the many clusters of symptoms that manifest in POIS.  Even if histamine is present and some symptoms can be associated with it, I think that the complexity of the immune system suppose that many other pro-inflammatory mediators are released in addition to histamine.   

So stabilizing the mast cells and prevent them to release pro-inflammatory mediators seems to be a better strategy than just blocking histamine. 

The use of quercetin in then very interesting in POIS, from my point of view, because it acts direclty on the mast cells, stabilizing them and preventing them to release cytokines and other immune messengers, so not only histamine, but the whole arsenal they hold in their granules.  By preventing degranulation ( the process by which they release their immune messengers in our tissues), quercetin or other mast cells stabilizers temper the cytokine storm that is usually seen in a hypersensitivity reaction.  Studies have proven this effect of quercetin ( for example, see http://www.ncbi.nlm.nih.gov/pubmed/22470478 and http://www.ncbi.nlm.nih.gov/pubmed/27187333 )  My personal experience with quercetin is in agreement with this, I get relief from using it, and it is one of the most important "member" of my pre-E pack of supplements.

Chrysin is another bio-flavonoid, which, like quercetin, have mast cells stabilizing properties ( see http://www.ncbi.nlm.nih.gov/pubmed/21515303 ).  I lately found about this one, so I have bought bee propolis, which contains chrysin.  I am at the beginning of my experiment with it, but so far, I tolesrate well bee propolis ( no side effect), and I feel more energized when taking it.  I am slow in my introduction of a new products, because I had bad surprise in the past, so I did not take it yet in the context of a POIS acute phase. 

There is a prescription mast-cell stabilizer  ( montelukast, brand name Singulair), but like I have already mentioned, I have chosen not to use prescription drugs, as long as I can get relief with a stack of natural products.  Keep in mind that drugs are classified "prescription only" because they have at least one potential serious side effect, so yes, they are powerful, but it is always a give and take.  Sometime, this severe side effect is rare and occur in only a small fraction of users, but I do take a very safe approach.... I had enough problems just with POIS itself, so I prefer quercetin, omega-3, flaxseed oil, and the other supplements that are part of the pack I take before E.

Did you know your brain can release Histamine in neurotransmitter form without mast cells? I take all the herbal mast cell stabilizers before O and I still get symptoms. I think it's our brain release of Histamine that causes POIS and not the mast cell release of histamine.

Symptoms: Brain Fog, Frustration, stuffed nose, anger, anxiety, and feel zoned out.
FloppyBanana
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« #7 : May 22, 2016, 12:37:12 AM »

VagS,

histamine n-methyltransferase breaks down histamine in the brain. See link its damn expensive to buy though. I don't think this type of product is available for personal use.

https://www.rndsystems.com/search?common_name=Histamine%20N-Methyltransferase/HNMT

Please note I have no financial interest in the above site.

Patrick

30 years of POIS. Mytelase after O with Iceman breathing technique.
Muon
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« #8 : May 06, 2019, 01:56:24 PM »

POIS is most likely a mast cell activation disorder

Mast cells are primitive cells of the immune system which act as “sentinels,” present in all tissues but standing guard most prominently at the body's environmental interfaces, e.g. the skin, the gastrointestinal tract, the respiratory tract and the genitourinary tract. Unlike lymphocytes, which have great specificity, mast cells use non-specific chemical mediators as their dominant mechanism of attack against foreign invaders (e.g. parasites). More than 200 different mast cell mediators have been identified, including histamine, tryptase, heparin, prostaglandins and leukotrienes.

Unlike allergies, which involve specific IgE-mediated activation of mast cells, mast cells in MCAS are activated inappropriately by specific and non-specific triggers, such as positive or negative emotional or physical stress, extremes of temperature or temperature or barometric pressure change, environmental chemicals, alcohol, high histamine foods, odors, physical stimuli (e.g. pressure from a tourniquet), drugs, and the non-drug ingredients (excipients) in medication products. Since mast cells are present in all organs, and since their chemical mediators enter the bloodstream, inappropriate mast cell activation can produce a large number of signs and symptoms that may vary and occur in a fluctuating pattern, often creating a complex clinical picture. Like most diseases, MCAS exists on a spectrum, ranging from very mild to extremely severe, and it has been estimated to affect up to 17% of the population.

Symptoms of MCAS may be acute and/or chronic. Skin flushing, itching, fleeting rashes and hives are very common, but not all patients have grossly obvious cutaneous manifestations. Other common symptoms include bone, muscle, joint and/or neuropathic pain; paresthesias; gastroesophageal reflux; abdominal pain; nausea/vomiting; bowel motility issues (gastroparesis and/or diarrhea alternating with constipation), presyncope/syncope, heart rate and/or blood pressure lability, chest pain, dyspnea (often subtle, typically described as an occasional brief inability to take a deep breath), unexplained weight loss or gain (which may be significant), anxiety, depression, mood lability, cognitive dysfunction, sleep disturbance, lethargy, fatigue, malaise, fevers, night sweats, headache and vertigo. Many patients experience mast cell “flares” or “spells,” but more severely affected patients also have chronic symptoms due to constitutive mediator release aside from mediator release related to aberrant reactivity. Prior to adulthood, patients with MCAS often initially enjoy symptom-free intervals interspersed amongst symptomatic periods. Over time, symptom-free intervals shorten, and finally symptoms become chronic with an intensity which fluctuates, but with an overall trend toward steadily increasing severity. An increase in disease severity often follows major stress. Mast cells are also intimately involved in growth regulation.

Patients with MCAS have often experienced a lifetime of multi-system unwellness with broad themes of inflammation, allergy, and disordered growth. For most MCAS patients, signs of the disease first emerge in childhood (median age at symptom onset is 9 years), but there is an average delay in diagnosis of MCAS of 30 years In one evolving model, MCAS increasingly is being suspected to arise proximately from mutations in one or more mast cell regulatory genes, and these mutations – usually somatic, heterozygous, and multiple – themselves likely emerge due to complex interactions among other mutations which are germline (i.e., inborn) and both genetic and epigenetic6, 7. Stressor-induced cytokine storms, too, may significantly impact these interactions and the development of the consequent somatic mutations (that is, mutations which are acquired, not inborn, but often beginning relatively early in life). MCAS may also occur secondary to an underlying allergic, infectious, immunodeficiency or an autoimmune disorder.

Most of the pois treatment prepacks work  largely by blocking the mast cell activaton or histamine release.

Niacin
http://getwellstaywellathome.com/blog/2015/06/seasonal-allergies-and-the-niacin-flush/

Taurine
https://www.ncbi.nlm.nih.gov/pubmed/28694089

TRT
https://journals.aace.com/doi/pdf/10.4158/EP161530.CR

Relief with Antihistamines, flavanoids in fenugreek&garlic, oral corticosteroids ,methylation support,pre-pack with  IDO/TDO/NMDAr blockers+ anti-oxidants and gluten free diet etc  all point to mast cell activation disorder.

Most of our members get relief with one of the above mentioned ways which also fits with MCAD where everyone has individual triggers and get relief with personalised treatment.

So POIS  is most likely to be MCAD triggered by mast cells present in the urinary tract and causing systemic inflammation which many a time crosses blood brain barrier and results in neural inflammation.
Muon
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« #9 : May 06, 2019, 03:26:32 PM »

Great compilation (navigate via the bar at the top of the webpage):

https://www.mastattack.org/
« : May 06, 2019, 03:29:31 PM Muon »
b_jim
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« #10 : May 06, 2019, 03:35:36 PM »

Brilliant, very nice job.

Taurine = Anti-Pois
Nas
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« #11 : May 06, 2019, 05:03:48 PM »


POIS is most likely a mast cell activation disorder
It's not for my case, since therapy against MCAS was fruitless.
demografx
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« #12 : May 06, 2019, 09:59:26 PM »

Brilliant, very nice job.
I agree.

10 years of major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.
aswinpras06
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« #13 : May 07, 2019, 12:56:26 AM »

Brilliant, very nice job.
I agree.

Thanks a lot Muon, B_Jim, Demografx and especially Quantum.

Quantum's compilation of Pois types is of great help to everyone suffering from POIS.

Before joining here I knew nothing about medical causes for Pois.  Now I believe I have gained some medical knowledge by reading the posts on this wonderful forum.

Thanks Demo and other administrators  for running such a great forum.

Some members have only neural symptoms.  I have found some links on mast cell and neural inflammation&diseases

https://www.frontiersin.org/articles/10.3389/fncel.2019.00054/full
https://jhu.pure.elsevier.com/en/publications/a-mast-cell-specific-receptor-mediates-neurogenic-inflammation-an
https://www.omicsonline.org/open-access/the-role-of-mast-cells-and-neuroglia-in-neuroinfectious-diseases-2314-7326-1000190.php?aid=66265
https://www.hindawi.com/journals/mi/2016/1924603/
https://link.springer.com/chapter/10.1007%2F978-3-0348-8131-9_7
aswinpras06
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« #14 : May 23, 2019, 10:03:46 AM »


POIS is most likely a mast cell activation disorder
It's not for my case, since therapy against MCAS was fruitless.

Hi Nas

As per  a recent article from American Academy of Allergy, Asthma & Immunology.  mast cell diseases can only be partially  treated with current medications.
Hence your failure with therapy for MCAS may not rule out whether you have the disease or not unless you meet a immunologist for confirmation.
 
https://www.aaaai.org/global/latest-research-summaries/New-Research-from-JACI-In-Practice/mast-cells
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