Muon's Case

[Muon]

My older brother (not the POIS one, age: 41) starts to develop memory problems and fatigue.

Do you think that there is any common genomic link with you and your other brother having POIS, and that in his case, it would be a late-onset, and not related directly to sexual activity?

That's the reason I'm making this note. Too early to draw this conclusion but I have it on my mind yes. Time will tell. He blames the fatigue on his recent dietary switch, namely, eating less carbs and more fat.

[Muon]

Low grade chronic stress affects center of head. Body gets stiffer. Harder to move.

Muscle rigidity is asymmetric.
https://www.pharmacologicalsciences.us/respiratory-depression/opioids-and-muscular-rigidity.html

"While in Parkinson's disease, increased muscle tone is induced by decrease of dopamin-ergic neurons in the striatum, opioid-induced rigidity is due to an enhanced degradation of the transmitter dopamine resulting in a functional deficit of a sufficient level in the nigro-striatal pathway"

"Within the striatum there is a dense accumulation of opioid binding sites, which interact with dopaminergic D2-receptors."

My younger brother told me that dopaminergic meds that raises his prolactin level makes his sexual trigger symptoms worse. This could indicate low dopamine levels.

[Muon]

Tried Quercetin Phytosome for short term (~20 days), not so much for POIS but for general well-being, although had O's while the stuff was in the blood. 500 mg/day in the morning and sometimes an additional 250 mg in the evening. Could try higher dose in the future. No effect at all. My mother uses it but has no effect on her while neuroprotek did.

[Muon]

My mother uses it but has no effect on her while neuroprotek did.

After 60 days on 500mg QuePhyto a day she noticed a difference. Reduced pain in leg and reduced anxiety.

My older brother stopped taking quetiapine. He takes 4 drops of 5% CBD oil Jacob Hooy for his insomnia which turns out to be helpful…at least for now.

[Muon]

I wonder if POIS is related to some sort of mucosal mast cell - vagus nerve - brain stem axis.

[Progecitor]

Hi Muon! I think the pregnancy issue is also related to the estrogen imbalance hypothesis. Your mother's symptoms getting weaker with menopause also support this. Have they ever tried resveratrol or astaxanthin?

Notably, although E2 has nearly the highest and equal binding affinity for ERa and ERB, E1 and 2-hydroxyestrone (two quantitatively predominant endogenous estrogens in nonpregnant woman) have preferential binding affinity for ERa over ERB, whereas 16a-hydroxyestradiol (estriol) and other D-ring metabolites (quantitatively predominant endogenous estrogens formed during pregnancy) have preferential binding affinity for ERB over ERa.
https://academic.oup.com/endo/article/147/9/4132/2528319?login=true

[Muon]

Have they ever tried resveratrol or astaxanthin?

No. What dose of those? ERA/ERB ratio of activity? There is a case who mentions menopause in the women thread plus one with high estrogen level. I feel health benefits out of POIS from fresh Pomegranate fruit. I get tired first after ingestion (i think it’s a mucosal reaction), which disappears quickly then once it’s in my system i feel slightly better. Minor effect though.

[Progecitor]

I can't say that these had the most potent effect in my case, however they appear quite safe while also have a noticeable positive effect. They also proved to be able to increase the ERB:ERa ratio in a study.
https://assets.researchsquare.com/files/rs-1167112/v1_covered.pdf?c=1639668824

The research is quite scarce and mostly focuses on soy and red clover even though I don't think these are the best supplements to manage this issue.

I only did short tests with these, but my symptoms were getting better as soon as the first day.
I took 4 mg astaxanthin two times a day and on a separate occasion I took 250 mg Resveratol (Polygonum cuspidatum root extract) also two times a day (morning and evening evidently).
The details are in my summary.
https://poiscenter.com/forums/index.php?topic=3798.0

It is true that at menopause estrogens decrease, however a high estradiol level is only one cause for ERa domination, but there could be several other reasons for an altered ERB:ERa ratio. This ratio seems to play a significant role in several other diseases like asthma, multiple sclerosis, breast cancer, prostate cancer, Alzheimer's disease and actually many more, but I guess if so many people had a high estradiol level it would have been noticed already. As both ERa and ERB have about a thousand genes they modulate it is really hard to guess the exact problem. Neverthless the important thing is that treatment-wise most of the selective estrogen receptor modulators (SERM) are beneficial for me. Some of these have only a weak effect like your case with pomegranate, however combining a few of them may have a much better effect.
The ERa-mediated pathway mainly suppresses inflammation and increases cell proliferation, while ERB-mediated processes decrease cell proliferation, but increase cell repair and cell survival, although it is also a major regulator of apoptosis. Of course in other cases the ratio may be altered differently and absolute hormone levels also count. Actually in a high estradiol setting even ERa agonists may theoretically decrease ERa dominance as they could replace estradiol and result in lower activation.
It is really a trial and error method at this point and I am only in the process of figuring this out myself, however I am completely sure that estrogen receptor beta is a major factor in my case and thus likely so in other POIS cases as well.

[Muon]

Brain stem, sensory nerves, blood flow, autonomic, temperature triggers.

Brainstem Abnormalities in ME/CFS: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings

[Lihua]

hello Muon, have you ever tested your intestinal bacteria or SIBO? Is the result normal?

[Muon]

hello Muon, have you ever tested your intestinal bacteria or SIBO?

No, No.

[Lihua]

hello Muon, have you ever tested your intestinal bacteria or SIBO?

No, No.

Why not, various paper and people have shown that it is almost impossible that POIS is caused by endocrine problems, maybe the intestinal problems is the root reason.

[demografx]

…various paper and people have shown that
it is almost impossible that POIS is caused by endocrine problems…

emphasis above (bold) is mine -Demo

Out of all the many medical specialists I consulted since the 1970’s, endocrinologists are the only medical professionals who have significantly helped my POIS. For the last 11 years. And I am not the only one here.

[demografx]

…various paper and people have shown that
it is almost impossible that POIS is caused by endocrine problems…

emphasis above (bold) is mine -Demo

Out of all the many medical specialists I consulted since the 1970’s, endocrinologists are the only medical professionals who have significantly helped my POIS. For the last 11 years. And I am not the only one here.

Has anyone tried this service? I’m thinking of calling them for
online endocrinology advice to supplement my periodic visits with my regular endocrinologist. My regular endo doesn’t understand POIS very well, so I feel that 2-endos-are-better-than-one!

Between my primary care physician, cardiologist, and endocrinologist, I’d like to get a better handle on how much testosterone (for POIS) is ***safe*** (I’m 75 years young - - with cardiac issues).

JustAnswer Endocrinology:
https://tinyurl.com/2p8seujy

[demografx]

…various paper and people have shown that
it is almost impossible that POIS is caused by endocrine problems…

emphasis above (bold) is mine -Demo

Out of all the many medical specialists I consulted since the 1970’s, endocrinologists are the only medical professionals who have significantly helped my POIS. For the last 11 years. And I am not the only one here.

Received an e-mail from an outside expert/authority on POIS:

”I will say that hormones influence a great many factors that may be relevant to POIS symptoms, including the inflammatory system and the nervous system. So it’s reasonable to think an endocrinologist would be a useful part of the treatment team for POIS.”

[Lihua]

…various paper and people have shown that
it is almost impossible that POIS is caused by endocrine problems…

emphasis above (bold) is mine -Demo

Out of all the many medical specialists I consulted since the 1970’s, endocrinologists are the only medical professionals who have significantly helped my POIS. For the last 11 years. And I am not the only one here.

almost all of the blood test of POISer have no any problems----vitamin mineral or hormone

[BoneBroth]

Maybe we havn't done the correct tests yet.

[demografx]

Maybe we havn't done the correct tests yet.

Agreed.

[Muon]

Exerting force (holding something in my hand (static force) or riding bicycle (dynamic)), acts on the middle of my head if that force exceeds a certain value. Once the latter has been triggered, some kind of body tone/tension systemically doesn't adjust properly. Result will be me riding the bicycle with stiff/tense muscles. Stress, bad posture, heat and POIS can mimmick similar behaviour. The type of Fysiotherapy I had throughout history doesn't work, wrong approach. Exercising in this kind of state can lead to trembling shortly post exercise, you do not gain anything from this.

Getting angry or startled by a loud sound like a firecracker (or sub zero ambient temperatures) does change this for the better. I get the impression that I increase blood and/or induce an adrenaline peak. I could reverse POTS in the past by inducing a muscle pump via power exercise (sounds contradictory with the text above). (something could be underperforming) 

Something is going on near the brainstem (pons/medulla?), as in a abnormal response. Is Dopamine/Adrenaline/noradrenaline involved? I also think that additionally the immune system is involved (Mast cells?), thus pointing in the direction of neuroimmune.

I get the impression that applying a force easily overloads the middle part of my head (just as arousal/orgasm does btw).

[Muon]

Well for me I've found that excess brain glutamate is the thing that causes this neurological pressure feeling in the head. If you have issues with eye contact, autistic symptoms, ocd, then high glutamate low gaba is usually the cause of that.

Insufficient dopamine or norepinephrine could also cause the the head problems you're experiencing:

"Dopamine circulates systemically and has many functions beyond activating post-synaptic neurons. A systemic dopamine deficiency, or insufficient D1 receptor agonism can easily create inflammation via increased NLRP-3.

NLRP-3 can cause anxiety, hypertension in a sodium-rich environment and catabolism of norepinephrine. Insufficient dopamine and/or norepinephrine can impair blood flow in key tissues, cause neurological disorders and is well-known for causing debilitating movement disorders / muscle paralysis, including gastrointestinal tissues."

If excessive dopamine metabolism is combined with a DBH deficiency, the subjective experience could resemble the horrible "disulfiram effect" - custodially imposed on some cocaine users - any increase of dopamine and/or alcohol metabolism does not cause pleasure, instead causing anxiety, nausea, potential seizures and/or severe sensory-motor polyneuropathy." - This is what I used to experience; one drink of alcohol would give bad anxiety, bad speech problems, brain fog, really severe pain in head (not typical headache) like I'm about to have a seizure. Tyrosine caused bad brain fog speech problems, and would wake up feeling really rough the next day. Cocaine no pleasure just really bad anxiety and feeling bad, Coffee no pleasure or good feeling just dilated pupils limited speech and vitamin C would also be the same as coffee. Vitamin D also brain fog and anxiety

An imbalanced GABA:glutamate ratio can lead to excessive dopamine metabolism, excitotoxicity and oxidative stress. This can sometimes be caused by insufficient NMDA inhibition (further relating to magnesium and/or zinc deficiency).

The sensation of my heart beating too strongly evolved into a full tachycardia at random times during the day and night, and my usual extrasystoles, that I've had since I was a kid, got worse, more scary and more frequent. I visited a cardiologist, but he couldn't find anything that was wrong with my heart. I felt dizzy and unsteady, with a strange sensation of pressure in the middle of my brain, but it never affected my mental abilities

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.