POISCENTER
POIS Life Style => Lifestyle Diary and POIS Summaries => Topic started by: IronFeather on March 27, 2021, 08:12:15 AM
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Introduction
Hello! I am a 25-year-old Spanish woman with POIS. In this thread I will detail the evolution of my case, from the very beginning until today (March 2021), and I will also include the results of my main medical tests so far, in case it might help someone or maybe shed some light on this terrible mysterious issue.
Please feel free to comment and share your ideas. We can beat this!
Index
1. My life before POIS
2. My teenage years: the first symptoms
3. Progressive worsening
4. Unexpected explosion: the worst POIS episode ever
5. The good years: sports & me
6. The bleach catastrophe
7. My POIS theories
8. Medical tests & results
New: I have now added the complete list of all my blood test results since 2014!
Link near the bottom of this page.
Now also added a summary of abnormal results, next to the previous attachment, translated into English.
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1. My life before POIS
I was born in 1995 by C-section. It was a scheduled procedure (not an emergency), since my mother was older than 40 years old at the time she got pregnant with me, and that was considered being old to have children at the time. This was proven to be a big mistake: the doctor botched up the administration of anaesthesia and overdosed her, nearly killing her. She spent two days in a sort of coma and the doctors told her "she was very lucky to be alive", but didn't ever specify what exactly had happened. She didn't suffer any dramatic consequences, even thought her memory was affected and she isn't as good at memorizing and remembering things as she was before. And apparently I wasn't significantly affected either, but who knows?
My first health problem was what seemed a bad reaction to milk as a baby. I was fed with formula, and it gave me stomachaches and diarrhea, so my parents stopped giving me milk as soon as it was possible. It isn't clear what the issue was, since I'm not lactose intolerant and have eaten tons of yoghurt and cheese in my life, maybe it was a stomach bug and the problem was falsely attributed to milk.
I've always been sensitive to cold, and during my entire childhood I was very prone to catching whatever bug was around: colds, the flu, everything. I used to get sick at least twice a year. But apart from this, my only health issue was a sensitive stomach. I've always had an immense appetite, so my parents thought I was eating too much and this was causing me to develop my periodic episodes of vomiting, diarrhea and fever, which usually lasted around two weeks before everything went back to normal.
But when I was 10 years old, I suffered an intense episode of diarrhea that lasted 4 months, made me lose half my weight (I went from 52 kg to 28 kg), and had my parents pulling their hair out because all medical tests came back normal and no doctor could figure out why this was happening. Thanks to my mother's wonderful intuition, she figured it out on her own: I was intolerant to soy, which I loved and used to eat in various forms since I was a little kid (soy bread, miso, soy spaghetti, soy milk...). This was proven to be the cause of all my previous stomach problems too: they completely erradicated it from my diet, and I've had an iron stomach ever since, no issues at all. According to a doctor, I eat enough to feed two large men, and I've had zero problems since I don't eat soy, I didn't even get sick when we ate something spoilt at home and everyone else had terrible diarrhea for days.
At the end of that episode that made my mother discover my soy intolerance, when I was already almost recovered, I had during a few weeks the first symptom that I've later experienced in POIS. It was a few days before Christmas, and me and my mother had gone for a walk around town so I could look at toys and books and decide what I wanted. When we came back home, I felt strange. It's a very confusing feeling to describe: almost as if my body "didn't need to breathe", or forgot how to regulate the breathing pattern. I could hold my breath and feel no need to breathe in a long time. I had to "breathe manually", which led to hyperventilation and panicking. I had a few attacks like this during the next weeks, but after that it resolved spontaneously, even though it happened a few times in the next years, especially on very hot days in the summer (my favorite weather). I learned to live with it and not panic if it happened, and that was it. Now, considering the evolution of my POIS, I believe exercise was the trigger.
Between 10 and 13 years old I lived very happily, all my stomach problems were solved and I wasn't as sensitive to cold anymore. Those were my best teen years, always full of energy, growing very quickly. I gained 20 cm of height and 24 kg of weight in a year, and when I was 12, everyone thought I must be at least 18 and asked me how university was going. It was an amazing recovery. But it didn't last long - this was when my POIS started.
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2. My teenage years: the first symptoms
I had always been very sexually active, as embarrassing as it is to admit it. I started masturbating at around 3 years old - of course I didn't know what I was doing, just that it felt good and, somehow, that I should keep it a secret. I did it at least 2-3 times a week during my entire childhood, except when I was sick, and it never gave me any problems whatsoever. When I first got my period, at 11 years old, I realized that masturbating a few days in a row made me bleed between periods, so I started to avoid it for the first time. It was also at this age that I developed terrible acne on my face, chest and back, and it has never gone away, even though my chest and back don't look as bad as they used to.
Around 13 years old, I began having weird episodes of fever (ranging from 37C to 38.5C) with no apparent cause, that lasted exactly 24 hours and made me stay in bed until the next morning, when they were over. During these episodes I felt the same sensation as if I had caught the flu: muscle aches, chills, very warm skin, swollen lymph nodes in the groin and armpits, general feeling of being unwell, and sleepiness, plus a weird hyperactivity/mania before the fever set on. At first I had no idea what was causing them, as they didn't happen after every orgasm, just sometimes. I believe there was a build-up pattern happening: many O's in a row, or in consecutive/close days, made it more likely for the symptoms to appear.
There is another interesting symptom that appeared at this age and stayed with me forever, even when I'm not sick with POIS. I can't lay on my left side for too long, or else I get a very intense sharp pain in a vertical line exactly to the left of the sternum, as if there was something about to explode in there. I even thought of an aneurysm. But ultrasounds have shown nothing, and the pain doesn't appear with pressure when a doctor examines me, it just happens if I compress that region for too long. It seems to me like a nerve that is susceptible to prolonged compression and/or that isn't working properly, especially because it comes with a strange numbness around it and a strong tingling sensation.
This was the time when my growth stalled. I was 172 cm tall at the time, and weighed 62 kg. My height is still the same, but my weight started slowly going down until it reached 55 kg, and it has stayed the same ever since, no matter how much I eat (something that didn't happen before, even though I've always been slim). When I'm sick it can fluctuate a bit, usually down to 52-53 kg, and then it goes up again and stays at 55.
After a few months, I also developed another symptom: softer stool during the episodes, almost diarrhea, but not quite. This happened when the other symptoms were worse. And for many years, from 13 to 16-17, this was what my POIS was like. Nothing too serious, so I didn't really consider to stop masturbating from time to time, I was just more careful to not overdo it, and to space it in time. I thought that maybe it was all due to crazy hormones and that it would go away once my teenage years were over and everything had settled properly. How wrong I was.
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3. Progressive worsening
Slowly, but steadily, things got worse and worse. At 17 years old, my POIS episodes became more and more frequent, and they were also longer, lasting two or three days instead of just one. I started university, and everything went great, I had a happy social life and almost perfect grades, but the shadow of POIS hung heavily over me - I couldn't have a normal relationship because of it, and had to reject everyone who showed interest in me. It wasn't too much of a problem back then, as I wanted to focus on my studies only, but it's becoming a bigger and bigger problem with time: I want to form a family, and have children!
In my third year of university, when I was 19, I had the first POIS episode that lasted longer than a week, precisely at the end of the summer when I had my first and only week of holidays in the entire year. I had masturbated the day before, which I later hated myself for, and had to take my last exam with the full set of symptoms going on. Luckily I've never had significant mental symptoms associated to POIS, except for irritability (getting furious at the slightest provocation, feeling like screaming at everyone for the smallest reason) and a very slightly (but noticeably for me) decreased ability to form complex sentences quickly, and so my grades weren't affected. I went on holidays that week and said nothing, but I remember I had a fever all the time and my appetite was very diminished even though there was nothing wrong with my digestive system itself (I had to force every bite down, I had no desire to eat, but I didn't develop any problems because of eating a lot without feeling hungry), and I had a general feeling of deep unwellness that made it impossible to enjoy anything I was doing.
From this point on, POIS symptoms usually took two weeks to completely disappear, but they only consisted of fever (around 38C), swollen lymph nodes, nausea, feeling unwell, my acne flaring up, a strange sensation of tightening/tension in the diaphragm before the other symptoms started, and having a very decreased appetite (not during the entire episode, just the first few days).
The feeling of nausea was located in a specific point of the abdomen, exactly where the sternum ends, which leads me to believe in a vagus nerve malfunction. The only time I ever had POIS symptoms without any sexual activity having caused them was one day when I spent around an hour laying in bed belly-down, reading a book. It seems I can't apply pressure to that particular spot below the sternum where my feeling of nausea is located, or else POIS starts. I felt nauseated afterwards, with a 38.5C fever and zero appetite, during three days.
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4. Unexpected explosion: the worst POIS episode ever
Once I graduated in Mathematics and started studying Physics (two years later, at 21 years old), I experienced the worst POIS episode I had ever had in my life, that worsened my previous symptoms permanently and added new complications. It was February of the year 2018, and I hadn't developed an episode for at least two months. Suddenly, one afternoon my throat started to feel as if had been screaming for a long time or rubbing it with sandpaper. The next morning I had a 39.2C fever and was feeling so weak and ill that I couldn't get out of bed, and my tonsils soon were so swollen that swallowing felt like I was swallowing knives. That typical feeling of nausea that had always accompanied my POIS symptoms was stronger than ever, and I remember my saliva was so dense that I almost choked on it a couple of times - dehydration? I was so worried that I went to the ER twice, once they told me it had to be "a virus" and the next time they did a blood test and told me it was probably "some bacteria". But I went to a specialist, who prescribed me more specific tests, and everything came back negative, almost all my results were perfect. The only parameter that ever showed something abnormal was the C-reactive protein, which was very high.
I started throwing up everything I ate, and sometimes what I drank too. The second time I went to the ER they prescribed me an antibiotic, cefixime, which helped a bit but was a disaster for my digestive system - I started going to the bathroom three or four times per day, but I had no diarrhea, it just seemed as if everything I ate came out with no absorption happening, so I had to stop taking the antibiotic (I believe it was affecting my gut bacteria). Thankfully after a couple of weeks my symptoms resolved spontaneously like usual, but the whole ordeal lasted exactly one month. I had to miss classes for three weeks, and I'd never even missed one day before.
From this point on, every single time I had my usual set of POIS symptoms, my throat hurt when I swallowed and I could see one or two white spots on it if opened my mouth in front of the mirror, most of the time in the left side. No doctor could ever tell me what it was or what caused it. Also, a particular spot in the left side of my left breast (sometimes in the right side of the right breast too, if the episode was serious enough) got slightly swollen and very sensitive to touch, it hurt a lot to press it, which also happened during my periods sometimes.
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5. The good years: sports & me
Six months after that, on September 2018, I signed up for a martial arts class for the first time, because my best friend had just started going and was teasing me all the time about it, trying to get me to join. This was how the best years of my life started - I've never been happier, or healthier. When I realized how weak I was compared to all the others, I started training calisthenics at home, and for a year and a half, I trained every day and went to the martial arts lessons twice a week.
I got much stronger than I ever was, I could do 200 push-ups a day, I felt full of energy, and on top of the world. And the best part of it was, whenever I felt a POIS episode coming (sometimes, even if the symptoms had already appeared) I could exercise for a bit and it would go away instantly, almost completely, or at least it would be very reduced in its intensity. The only downside was, whenever I developed POIS symptoms, my strength would significantly decrease (around 20%-30%), and I had to train again to gain it back (maybe an inflammatory process damaging muscle?).
Something had me a little bit frustrated, though. I had always been praised for being much stronger than my slim physique suggested, and I was proud of it, and happy with how quickly I could gain strength. But even when it was unusually easy for me to progress to more advanced exercises that required more physical strength (considering I'm a thin woman with normal testosterone levels), it was very difficult for me to increase the number of repetitions in any certain exercise. This has always been me: good strength, very low endurance. And my cardiorrespiratory capacity is ridiculous, I can't even run half a kilometer without panting like a dying dog and having to stop, which was a problem in martial arts too, since just getting up quickly from the floor a few times made me short of breath.
Another puzzling thing was that I couldn't train the plank position. Just holding it for a few minutes a day, spread over a handful of sessions, made me feel that familiar sensation of nausea and irritability and develop a slight fever. Also, exercise made my acne flare up a lot, same as it had always happened during any POIS episode.
But I could exercise as much as I wanted and never got any adverse effects from it. I remember one week when I trained like crazy every single day, because I had a belt test next week, and I felt better than ever, no fatigue, no problems, nothing.
Then came the pandemic, and on February 2020, I went to my last martial arts lesson before everything was closed and the classes cancelled. Little could I imagine I would never be able to go back.
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6. The bleach catastrophe
During March and April 2020, we were in lockdown, and the paranoia about the pandemic was at its peak. Everyone was obsessive about hygiene, and my mother caught the "cleaning fever" too: she started using bleach mixed with water to clean everything, to mop the floor, to disinfect the shopping bags and the outside of all food packages... By April I was already feeling weird with unespecific symptoms: my heart beated more intensely, as if each beat was much stronger than usual and resonated in my chest and neck, and sometimes I felt cold and had unexplainable chills even on hot days. I had stopped exercising in March because of a lack of free time, due to all the mess of adapting to online lessons, the immense amount of homework that professors threw on us, and so on, but in April I was determined to follow a calisthenics routine again. When I tried, I was surprised to discover that I started trembling right away even with the most basic exercises, as if I was making an immense amount of effort, which wasn't true. It felt as if my movements weren't smooth anymore, but instead made up of a series of minuscule discrete jolts, and I couldn't even form a tight fist with my hand without my arm shaking. I couldn't tense any muscle without it shaking. It was crazy.
I thought, oh well, maybe I'm tired, maybe I'm lacking some vitamins or minerals, so I thought it would be reasonable to postpone exercise until I could visit a doctor and see if this was the case. Because of this, all I did in terms of physical exercise between April and June was some dynamic stretching, and walking at high speed for one hour on my treadmill twice a week (as I said before, I get very short of breath too soon if I run, so I settled for half-walking-half-running instead).
Between April and May, I had an interesting symptom that I have yet to find an explanation for. Suddenly one day my right shoulder started hurting a lot, but it clearly wasn't a physical injury because doing push-ups didn't affect it (I tried doing some just to check if it was indeed somehow damaged). It had to be a nerve issue, or an accumulation of toxines, or who knows what, but not a real injury, because I hadn't even used my shoulder for anything important in at least two months. It went away in two weeks. By then I was determined to stop all sexual activity, since I now had no sports to counteract it with, but I relapsed once in the first days of May - and when the inevitable symptoms appeared, that very night, my left elbow started hurting immensely every time I bended my arm, as if I had ripped a muscle off or broken a bone. I almost couldn't use that arm to wash my hair that night, it hurt that much, but the next morning it was all completely back to normal, as if nothing had ever happened.
At the beginning of June, I developed exercise intolerance. I didn't realize at first that this was the cause of my symptoms, but one day I began feeling very sick after walking on the treadmill, had zero appetite, and got a fever and extreme weakness. I was puzzled, I had stopped all sexual activity more than a month ago, and I couldn't think of anything that was causing everything in my body to go haywire in such a sudden manner, and anyway, I had never felt so immensely tired during POIS before, nor had I ever felt random pains in my chest like it happened this time. Even lifting a spoon felt like a strenuous effort during the worst part of the episode.
After this, it all went downhill. That symptom I had when I was 10 years old before my POIS started, as if I couldn't regulate my breathing properly, came back stronger than ever, and this time it stayed. Most of the time I felt as if I was suffocating, with a horrible "electric feeling" right where I'd always had the feeling of nausea during my POIS episodes, under the sternum, as if electricity was passing through a nerve there, uncontrolled. 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, and I could carry on studying during the summer and kept my usual good grades. In August I started taking a vitamin-B supplement that a doctor recommended me because of my low energy levels, and during that time I relapsed and masturbated again. I'm not sure which of the two factors played a more important role in what happened, but the truth is, one night I woke up with a 140 bpm tachycardia, which eased into 120 bpm after a couple of hours and stayed at around 110 bpm for almost a week, with higher peaks in the middle of each night. It was terrifying, it felt as if my heart would never stabilize its rhythm, and would beat faster and faster until it gave out.
I went to the cardiologist again, but his answer was the same, nothing was wrong, even though he agreed that my heart rate was out of control and there had to be something causing it, but he was confident that it had nothing to do with the heart itself. I took my last exams in September and graduated in Physics, but I was still feeling terrible. It wasn't until the end of September that I realized, by pure luck, that it could be bleach that was affecting me so badly. And indeed, one week after we completely erradicated it from the house, the worst of my symptoms spontaneously resolved. But I was left with some after-effects that have changed my life:
- I can't generate enough heat to keep my body warm when the weather gets too cold. Even in warm weather, I have to sleep under a couple of blankets (I've slept with nothing on before, in the warmest days of the summer, or with just a sheet on me), or I wake up shivering and sometimes even with other symptoms like my heart racing.
- The exercise intolerance seems to be permanent. I can't even walk too intensely for longer than a few minutes or I get immediately sick with a fever, lack of appetite, inflammation in random places (last time it was my ribs), breathing disregulation, irritability and an intense headache that gets worse at night and makes me feel as if my brain was being compressed. I've tried running, push-ups, rope-jumping... and it all makes me sick in the same way, by doing only a couple of minutes or few reps of the exercise (30 rope jumps, or 10 push-ups, are already too much).
- Most of my strength is gone, especially because I can't make any physical effort without shaking, which makes it difficult apply force with any body part, to keep my balance when lifting something, to grip things tightly, and to coordinate my body properly. I bump into things a lot and look like a clumsy duck.
- My heart still beats too strongly sometimes, especially when laying down face-up in bed. It's very uncomfortable and sometimes even wakes me up at night. It gets better if I manage to get warm, usually by adding a ton of blankets to my bed until I start sweating. Masturbating is completely out of the question, it leads to episodes of out-of-control tachycardia, that always start in the middle of the night but sometimes happen during the day too, and also to that pain the left side of my chest appearing for a few days, without me having compressed that region by laying on my left side.
- I can't take vitamin B supplements. They give me insomnia, headache, irritability and restlessness. I used to be able to take them normally, and I'm not talking about huge doses that could make these symptoms reasonable. I've never had any trouble sleeping at night, but when I tried to take these vitamins again a couple of months ago, 48 hours later I spent an entire night in trying to fall asleep in bed and wasn't able to sleep a single minute. Two days after I stopped taking the supplement, my sleeping pattern was completely restored.
So, this is my life now. I can't exercise at all, I've lost most of my strength and all my progress in sports. I feel like I can't control my own body, this shaking with every movement that implies the slightest effort is infuriating, and I can't even play the piano like I used to. I have to study one more year at the Conservatory here to get my piano degree, and I don't think I'll be physically able to do it, since rehearsing some pieces at that level implies a lot of effort and is equivalent to, or even more intense than, an exercise session. It's already been 6 months since we stopped using bleach at home, so I don't believe these symptoms are temporary, but instead some sort of permanent after-effect of something that went wrong in my body because of the exposure to bleach. I feel stuck in a state where something is imbalanced, or working the wrong way.
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7. My POIS theories
At first I was sure that POIS was some sort of autoimmune reaction or disease, but I don't believe this anymore. As you can see in my medical tests, all immune parameters have always shown normal results, and many of my symptoms have led me to the conclusion that POIS is a result of something not being right in the nervous system. But I have no idea if the problem lies in the nervous system itself or if there is some kind of underlying problem that disregulates it or makes it work in ways it shouldn't.
My sudden bursts of tachycardia, the inability to regulate my body temperature properly, the lack of appetite that has nothing to do with any issue in my digestive system, the feeling of nausea exactly where the vagus nerve is located under the sternum, my inability to apply pressure to that spot without POIS symptoms appearing... it all seems to fit with some kind of malfunction of the nervous system in general and/or the vagus nerve in particular. I first started thinking of the vagus nerve when I tried to train core strenght using the plank position and got sick, because it implies a lot of muscle tension in that point, same as resting my body weight on it when laying down in bed reading a book had made me sick too. Recently I've tried diaphragmatic breathing when I'm sick with POIS and it seems to reduce the symptoms, which would fit in this theory, since it stimulates the vagus nerve.
Also, the feeling of tension in the diaphragm that I always get before a POIS episode starts could suggest the nerves there being affected. It is a symptom that has got worse with time, and sometimes it even happens when I start eating: my diaphragm and core muscles seem to contract when food enters my stomach, but it goes away if I keep eating.
The fact that all medical tests ever done on me have shown normal results makes me think it's all something that's happening in the nervous system itself, a malfunction that doesn't imply altered parameters in the blood. A virus infection of the nervous system, like in the herpes theory for POIS? I can't be sure, but given my symptoms, I'm pretty sure that the nervous system is what is causing all of this, at least in my case. But it can't have anything to do with psychological factors, I've always lived a happy normal life, I've experienced no traumatic events, and I'm not prone to anxiety or too susceptible to stress (in fact, I've always felt better when I'm working hard on something). Something must have damaged the nerves, how else could my shaking be explained? I've got normal levels of all the substances that doctors could think of in relation to this if it was caused by problems in muscle contraction (calcium, sodium, potassium, magnesium?). To me, it feels as if my nerve fibers couldn't transmit impulses properly, and instead did it in jumps and jolts. And it happens uniformly, there don't seem to be any body parts that are more affected than others.
Also, my sudden exercise intolerance seems to have an inflammatory component. Every symptom I get after exercising makes me think that there is an inflammatory process out of control (fever, headache, immense irritability, intense pains in random parts of the body), maybe because the vagus nerve can't regulate inflammation properly, as it isn't working the way it should for some reason?
The fact that such a catastrophic worsening happened as a consequence of exposure to bleach is a mystery to me, and it seems that doctors can't explain it either. Initially, I thought that maybe I had a problem eliminating toxic substances from the body, and that because of this the bleach fumes could have had an accumulative effect, damaging something. But wouldn't some parameters in my blood tests have to appear altered in this case? Maybe the bleach fumes weakened the body and an oportunistic infection by a latent virus flared up? Hopefully I'll find out someday.
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Hi IronFearher! Thanks for sharing your experience.
Have you tried any treatment aside from the sport that temporary helped you and the vitamines? Any suplements, medicines,...?
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8. Medical tests and results.
Here you can find the results of all my blood tests (2014-2021, both included), plus a study of oropharyngeal flora (which was normal) and a lactose intolerance test, that was negative.
I have also had a few ecography scans done, but nothing abnormal was found in any of them.
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Hi IronFearher! Thanks for sharing your experience.
Have you tried any treatment aside from the sport that temporary helped you and the vitamines? Any suplements, medicines,...?
Hi, positivethoughts! I haven't tried anything as a treatment for POIS, but I have taken a few supplements along the years, even thought I was sure none of them would help me with POIS. I just posted the results of all the blood tests I've had done since 2014, and as you can see in them, I've always had vitamin D and vitamin A deficiency, so I've taken vitamin A pills and vitamin D drops (both natural, because the ones sold in pharmacies had too many unnecesary additives in them). I haven't had much success and my levels of both are still low, even though I've taken huge doses at some points, which makes me think I have some sort of absorption problem.
Back when I was exercising a lot two years ago, I also took Inteligen's and Neuroforte, both generic natural supplements with multiple vitamins and minerals. I didn't take them for any particular reason, just because I thought it was reasonable to help my body and brain in some way, since I was studying a lot at university, playing the piano for hours every day, attending martial arts lessons and training calisthenics at home. I also took protein powder every morning that year, a vegan supplement made of hemp, rice and pea protein.
Recently, last summer, I tried to take the B-25 supplement by FairVital, but it gave me a terrible reaction as I explained above, so I had to stop it immediately. I tried again a couple of months afterwards, with the same result.
I haven't tried any medicines so far, as I'd rather not take any unless absolutely necessary.
Edit: I forgot to mention that I'm taking an Omega 3 supplement daily now (1 capsule/day), again for no particular reason, only because it's good for the brain (I'm still studying a lot) and heart (I'm still having spontaneous tachycardia sometimes, especially when laying down face-up). It's the Omega 3 supplement by EnerZona, quite expensive but worth it because it doesn't produce that horrible reflux that makes you taste fish oil all day long.
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Bleach?:
Stress, inflammation and cardiovascular disease (https://sci-hub.se/10.1016/S0022-3999(01)00302-6)
"Neurogenic inflammation may also occur when a toxin or chemical irritant to the skin stimulates sensory nerve endings with subsequent release of SP and/or other inflammatory sensory neuropeptides."
Thanks for the info Muon, but I can't open the link, it seems to be broken... does it let you open it?
I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin
Nice! I'll keep these in mind for my next doctor visit, let's see if I can manage to convince him to test for more specific parameters like these. So far, the lab where I had my last blood test done didn't test for TH1/TH2 even though it was included in the doctor's prescription, and the same happened with most B vitamins and all herpes viruses except for types 1 and 2. You can see all my medical test results above (it's quite a lot, 40 pages...).
I thought it was interesting that my B3 level is very low. I wonder why. My doctor just prescribed me niacin, but I'm not sure if I should take it, considering how badly I reacted to the B vitamins supplement I tried to take last year. Maybe it was niacin that I was reacting to.
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Wow this is a lot! It will take some time to go through it. Thank you for sharing this. Yes that link works for me, try other extensions like ee or st in url. Here is some info about a niacin pathway, last picture: https://poiscenter.com/forums/index.php?topic=3746.msg39890#msg39890
We need some people on this to disect it.
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You're welcome, Muon! I'm sorry that it took me so long to put this together and upload it here, I tried to do it last year but I hadn't kept most of the documents and had to email my doctors and the lab multiple times to find them all.
Thanks, the ee extension worked perfectly! That's very interesting, I'll have to read it more carefully but I've always had the impression that in my case (and maybe for everyone) two things are happening for sure: an out-of-control inflammatory response is being triggered when it shouldn't (after an orgasm, and now with exercise too), and the nervous system is involved (maybe the culprit).
When I realized how much bleach was damaging me, I thought I could have some problem with the elimination of toxic substances from my body, so that bleach fumes had accumulated in me, reaching toxic levels. But the idea that it could have activated the nervous system somehow makes a lot of sense. Do you think it could happen without touching the substance in question? Because I never touched bleach, it was just its fumes that I inhaled (and not too concentrated, I think, how it could have caused such a catastrophic reaction still puzzles me).
Oh, and sorry that my blood test results are in Spanish, I tried to translate them manually to English but gave up when I realized how long it was going to be, and just took screenshots and cropped them. I hope most words and initials are reasonably similar to their English equivalents...
Also, I think most of my results weren't too interesting, but I included them all just in case someone might see something that I'm missing. I also specified the date when each analysis was done, and whether I was experiencing POIS symptoms at the time or not. The time when I tested for more specific parameters was in the summer of 2019, and also in my last analysis in March 2021 (this was the first time they ever tested my niacin level).
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Hi IronFeather, thank you for your nice thread.
I don't have the skills to interpret your test results, but I noticed the positivity for Helicobacter Pylori. Maybe you said something about this elsewhere, but I guess that you were treated for this?
There are many common features with my own Pois. In particular, tachycardia, breathing issues, problems with exercise, problems when lying down and with a specific area near the heart or the sternum, impossibility to gain weight and muscle, now permanent fatigue/weakness.
Your pre-Pois story also speaks to me: you had gut and problems due to soy intolerance in your childhood, then solved this problem and had a perfect health for a few years between 10 and 13, then Pois. As regards my own case, I had intestinal issues in my childhood (frequent constipation, and colitis which sent me to the hospital two times) as well as some social/psychological difficulties (probably mild Asperger or schizoid personality), then after a specific period of my life (a one month holiday in a foreign country where my father was working) a very good period started when my mental and physical health was great, I gained muscle, friends, and was overall particularly happy (from 12 to 14 years old). Then progressively Pois appeared and my health got worse while both my early gut and psychological problems came back in a stronger way. I had always believed that this good period between 12 and 14 was due to the psychological benefits of my holidays with my father, but I just thought about something else: I was sick with turista (as is almost normal for holidays in Africa) and had diarrhea during the whole month. I wonder if this may not have cleaned my gut of SIBO or something like this, for some time. Whatever, sorry for the digression, but reading your story encouraged me to see a parallel.
If Omega-3 are not effective in reducing tachycardia, may I suggest you to try hawthorn (Crataegus) in case of crisis? For me, it's really efficient, notably before sleep - sometimes I would not be able to fall asleep without it. Apart from stopping tachycardia its also has a relaxing effect. Notice however that 1/ the effect doesn't last for more than several hours, 2/ obviously it's not a cure, it just helps to manage this specific symptom and 3/ sometimes, when Pois is really strong, it doesn't work (in fact, in my case my heart rhythm does decrease, but after some time I may have a kind of big nervous shake-up and then tachycardia comes back).
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Putting some half-baked notes here, will continue later:
Read articles completely:
Niacin in the Central Nervous System: An Update of Biological Aspects and Clinical Applications (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412771/)
Figure 3--->Nicotinamide/NAD loop.
Aspects of Tryptophan and Nicotinamide Adenine Dinucleotide in Immunity: A New Twist in an Old Tale (https://journals.sagepub.com/doi/10.1177/1178646917713491)
(https://journals.sagepub.com/na101/home/literatum/publisher/sage/journals/content/trya/2017/trya_10/1178646917713491/20171115/images/medium/10.1177_1178646917713491-fig1.gif)
Furthermore, mast cells, although they are not typical APCs, might play an important role in the tryptophan/QUIN/NAD+ pathway regulating T-cell activation.
Combo of supplements to stimulate serotonin synthesis:
Vitamin D and the omega-3 fatty acids control serotonin synthesis and action, part 2: relevance for ADHD, bipolar disorder, schizophrenia, and impulsive behavior (https://faseb.onlinelibrary.wiley.com/doi/full/10.1096/fj.14-268342)
A tryptophan metabolite, kynurenine, promotes mast cell activation through aryl hydrocarbon receptor (https://onlinelibrary.wiley.com/doi/abs/10.1111/all.12346)
Kynurenine, but not KA and QA, enhanced IgE-mediated responses, including degranulation, LTC4 release, and IL-13 production in BMMCs through the activation of PLC-gamma1, Akt, MAPK p38, and the increase of intracellular calcium.
IL-13: https://poiscenter.com/forums/index.php?topic=2545.msg40256#msg40256
Akt: https://poiscenter.com/forums/index.php?topic=3765.msg40359#msg40359
Elevated progesterone not a EC 1.14.99.9 deficiency, probably co-factor problem, not surprising the ones that are involved:
https://sci-hub.se/https://www.tandfonline.com/doi/abs/10.1080/13685530400004199
In male patients with cytochrome P450C17 (steroid 17a-hydroxylase/17,20-lyase; EC 1.14.99.9) deficiency, the progesterone levels are clearly elevated.
https://en.wikipedia.org/wiki/Steroid_17alpha-monooxygenase
It has 3 cofactors: NADH, NADPH, and Heme
IronFeather's low Nicotinamide levels in combination with my brother's result may indicate there is something going on with the tryptophan/QUIN/NAD+ pathway. He got low 5HT+tryptophan. Ironfeather could investigate tryptophan levels. Tryptophan catabolites can downregulate IL-17, some pathogens are able to induce this process. Her elevated neutrophils could indicate infection.
NAD metabolites act back on this pathway. POIS might be a metabolic/inflammatory trap. IFN-g acts on IDO:
https://poiscenter.com/forums/index.php?topic=2755.msg39987#msg39987
Low cholesterol+low vit D seen in Heather and Muon as well. IF's vit D metabolites could show vit D metabolism problems. Does NAD+ act on vit D metabolism?
Some overlap in certain symptoms between IF and Muon not fully adressed yet.
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Hi Iron Feather,
Thanks for having taken the time to create such a detailed thread.
Like you, my intellectual abilities are not affected by POIS. Most POIS sufferers have brain fog, memory problems, inability to concentrate, and so on. However, I use to have massive emotional symptoms, before developing my pre-pack method.
I also have exercise intolerance. When I do sports in the evening, I used to wake up the following night in hypotension and tachycardia. Hopefully, I found that taking enough potassium ( around 16 mEq) and magnesium after sports spare me that awful discomfort. However, it is not clear yet as to why potassium helps me, both in POIS and after exercise.
Your vitamin D is very low. There is evidence now that low levels of vitamin D are linked with higher levels of inflammation. Did your MD try higher doses to raise your level to normal? Do you feel better in summer when you can have skin exposure to the sun?
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I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin
Nice! I'll keep these in mind for my next doctor visit, let's see if I can manage to convince him to test for more specific parameters like these.
Forget about these for a moment. Low nicotinamide could indicate absorption issues. Discuss a Tryptophan test with your doctor (if this is available, probably not), serotonin could be checked as well.
You could modify post 8 and extract all the abnormal results from the file like I've done in my thread.
I thought it was interesting that my B3 level is very low. I wonder why. My doctor just prescribed me niacin, but I'm not sure if I should take it, considering how badly I reacted to the B vitamins supplement I tried to take last year. Maybe it was niacin that I was reacting to.
Running around with a deficiency isn't smart either. You have a low Niacinamide = Nicotinamide level if I've read it correctly. Niacin = Nicotinic Acid.
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Will the Th1/Th2 (IFN-g/IL-4) balance still be measured?
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Hi IronFeather!
Thanks for your great documentation and a very important piece of the puzzle since you are a female. I share alot of your symptom-history. I will take some time to analyse it. I'm planning to do a organ/symptom/analyse value list that helps us understand what organ is causing each symptom. I belive that the POIS related inflammation (caused by some hormonal inbalance) is comproimising organs in the whole body - specifically organs that has a high blood flow: blood vessels, heart, liver, kidney, brain and intestines. This explains why we experience so many diffrent symptoms.
Each organ gives it own symptom when function is decreased (or in chain reactions). Depending on what organ is the weakest link the symptoms appears diffrently on diffrent people. Some examples:
Kidney -> Low blood pressure, POTS, headache, varicose veins, slow intestines/constipation. I'm staring to belive the kidneys might be the most important organs relating to POIS symptoms since they are regulating the blood pressure - an adequate blood supply is everything for a good health
Liver/gall bladder - > Acne, varicose veins, yellowish stools, headache, blood pooling, thick blood, liver spots, low bilirubin levels and alcohol sensitivity.
Intestines - > Bloating, gas, candida, leaky gut, skin issues, coated tounge which leads to vitamin deficiency, advanced hormonal imblances, SIBO, auto-immune disorders (that cause damage on the same organ as POIS inflammation) and headache
Brain -> Headache, depression, no motivation and a long list of symptoms because of decreased function in hypothalamus/pitutary
Thyroid -> Temperature regulation, hotflash, difficulty sleeping, muscle weakness, hyperactivity.
Adrenal -> Cortisol excess followed by cortisol decline -> inflammation, testosterone deficiency. Cushing's syndrome, Addison's disease.
CNS (Central Nervous System) - > tingeling, difficult to breath, sudden urge to urinate
Blood vessels/blood - > varicose veins, blood pooling (thick blood) because of clumping platelets
Gonads (in males) -> Testosterone deficiency, slow healing process, aggregated inflammation
When the intestinal function is damaged (due to the POIS inflammation) it will in time lead to similar symptoms as POIS, because the process is the same: A leaky gut will leak substances into the blood stream and when those substances attach to organs the immune system will send lymphocyes to the site and cause inflammation. But instead of inflammatory hormones and hormonal break down products, this inflammation is caused by substances iike proteins, bacterias, fungus etcetera that should not normally escape from the walls of the intestines.
This came clear to me as I fixed my acne issue after doing a simle administrated liver cleanse (I dont get as severe acne after POIS now). I still get the other symptoms on POIS, but not so much the liver related, since the liver is now somewhat restored (with nutrition/detox). On POIS the liver might be so inflamed that might be working on only 5-30% of its normal rate (this is not easy to analyse due to the complexity of the livers detoxification stages, the stage 1 detoxificaiton pathway might work, but the path 2 pathway might halt. This leads to accumulated toxins in the whole body (headache). Some hormonal breakdown products are 10 times more toxic/inflammatry then the hormones itself. A compromised liver is very damaging for your health in the long run, however the liver has a tremendously capability to heal, even in a very bad stage.
With this view it might be more easy to plan mesures for the restoration phase. But you cant scoop water from a sinking ship forever. Although restoration is essential for the healing process the cause of POIS still must be solved. The main measure could be boiled down to stress management, better sleep and restraining from orgasm for at least a year. I get into more detail in my info below.
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Niacin, colitis:
GPR109a: The Missing Link between Microbiome and Good Health? (https://www.sciencedirect.com/science/article/pii/S1074761313005669)
(https://ars.els-cdn.com/content/image/1-s2.0-S1074761313005669-gr1.jpg)
Lack of butyrate producing species in Simon is no coincidence, butyrate acts on same receptor.
16S Microbiome test from Atlas Biomed (I don't have any printout of results, they are visible in a webpage with diagrams, so I can't post all of it)
- I am missing a number of important butyrate-producing bacteria such as faecalibacterium, roseburia, coprococcus, akkermansia. I also have very low eubacterium.
- I am also missing a non-butyrate bacteria called Lactobacillus.
- Bifidobacteria is about 2.4%.
Butyrate maintains the gut lining, it also produces regulatory immune cells that prevent autoimmune disease. People with Celiac disease and IBS have been found to have low butyrate bacteria. I think when we orgasm, oxidative stress rises and our butyrate bacteria cannot produce enough butyrate to suppress it so we get damage to the body.
If IF has a lack of butyrate producing species on top of B3 defiency it could make things even worse.
Could tryptophan have played a role in her colitis?:
Gut microorganisms and their metabolites modulate the severity of acute colitis in a tryptophan metabolism-dependent manner (https://link.springer.com/article/10.1007%2Fs00394-020-02194-4)
Impact of the Gut Microbiota on Intestinal Immunity Mediated by Tryptophan Metabolism (https://www.frontiersin.org/articles/10.3389/fcimb.2018.00013/full)
Poisers on ketodiet could have altered their NAD+ levels while on diet:
Ketone-Based Metabolic Therapy: Is Increased NAD+ a Primary Mechanism? (https://www.frontiersin.org/articles/10.3389/fnmol.2017.00377/full)
The tryptophan/QUIN/NAD+ and Tryptophan/Serotonin pathways could be messed up.
https://en.wikipedia.org/wiki/Butyric_acid
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Hi IronF, what induce full blown pois in your case, is this orgasam?
Do you get full pois from high sexual arousal without orgasam ?
Is orgasam crucial for full pois mode?
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My first health problem was what seemed a bad reaction to milk as a baby. I was fed with formula, and it gave me stomachaches and diarrhea, so my parents stopped giving me milk as soon as it was possible. It isn't clear what the issue was, since I'm not lactose intolerant and have eaten tons of yoghurt and cheese in my life, maybe it was a stomach bug and the problem was falsely attributed to milk.
My first health problem occurred when I was breastfed as a baby.
Opioid Peptides: An Overview of Functional Significance (https://link.springer.com/article/10.1007/s10989-019-09813-7)
"Either these are produced within the human body or they are derived from certain food sources (milk, cereals, vegetables, meat, poultry etc.), the former being endogenous opioid peptides and the latter are the exogenous opioid peptides."
They can also induce respiratory depression, it could tie into our episodes of manual breathing during hot weather conditions. Not sure what heat has to do with this aside from potential involvement of mast cells/dysautonomia/neuroinflammation.
I felt dizzy and unsteady, with a strange sensation of pressure in the middle of my brain, but it never affected my mental abilities, and I could carry on studying during the summer and kept my usual good grades.
I have similar sensations in a small area of the center of my head (related to vascular dynamics? Ballooning of a blood vessel? Note: MCs are relatively higher concentrated close to the endothelial lining).
Weirdly I have this same thing happen the first night of POIS episodes: when falling asleep it is like my brain forgets to tell my body to breathe, and I keep half falling asleep, realize I'm not breathing, and then get up gasping.
Generally if I just get up and read a book I'm fine, but if I try to sleep it continues on and off through most of the night. Other nights I am fine.
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Hi IronFeather, thank you for your nice thread.
I don't have the skills to interpret your test results, but I noticed the positivity for Helicobacter Pylori. Maybe you said something about this elsewhere, but I guess that you were treated for this?
Hi, Prospero! Thank you! I just read your thread too, and I'm surprised at how many similarities there are between our cases. We have very specific symptoms in common: the special sensitivity to abdominal exercises (holding the plank position made me sick even when I could do sports), waking up earlier when we're not in POIS, the unpleasant body odour when we're sick... and that fresh feeling with each breath when healthy. That particular symptom makes me think that there's something wrong with our nervous system's signals, because nor the fresh feeling nor the suffocating feeling can be real, since my oxygen saturation level in blood is 99% in both cases.
No, I was never treated for Helicobacter Pylori. It appeared after I started university, probably because the bathrooms were used by hundreds of students every day and I caught it from somebody else. I found out when I visited a gastroenterologist because of blood on my stool (after a colonoscopy, I was diagnosed with internal haemorrhoids, but I have never bled from them again), and he thought it wasn't important, since in his words "more than half the population has Helicobacter Pylori". So, I was never treated for it, and I was puzzled to see that it spontaneously disappeared over time. I'm not exactly sure why or when, all I know is that it was positive in February 2015, in September 2016, in January 2017 and in July 2018, but negative in June 2020. By then I had been exposed to bleach for 3 months, so maybe the bleach fumes, or my reaction to them, killed the H. Pylori somehow?
I didn't get tested for it between 2018 and 2020, so I'm not sure if it had already disappeared before the bleach. But my mother also had a positive result before (maybe she caught it from me?), and now her result is also negative. So maybe it was the bleach after all?
I was sick with turista (as is almost normal for holidays in Africa) and had diarrhea during the whole month. I wonder if this may not have cleaned my gut of SIBO or something like this, for some time.
That's so interesting! I wonder why many people with POIS report significant improvement when they get sick with something else. I've read in this forum that people sick with the flu experience no POIS symptoms while they have it. And gut bacteria gets mentioned very frequently too, who knows if some imbalance in it is throwing something else in us off-balance too and causing the symptoms. I remember I took probiotics after my worst POIS episode (because of the diarrhea that was caused by the antibiotic they prescribed me), maybe it helped me somehow.
If Omega-3 are not effective in reducing tachycardia, may I suggest you to try hawthorn (Crataegus) in case of crisis?
Thanks! I'll keep it in mind. So far, with abstinence and no physical exercise, my tachycardia seems to go away, but the slightest arousal or effort can bring it back. Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).
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Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).
Yes, I have this too, but it was somehow already the case in high school, before POIS. It has increased greatly since then, though, and more so while in POIS. Movies, series, video games, speaking in public, appointments, writing something important to someone... I'd say that, for me, omega 3 and magnesium+B6 usually help reducing these problems.
Now my main problem with tachycardia is when I lie down, though. (I'm sure that the problems with abdominals and push-ups were due to the horizontal position.) It's becoming a bit worrying these days, I can't control it anymore with Omega-3 and hawthorn, though it's worse without them. And a new problem appeared since last January, first by short periods but now it's becoming permanent, it seems: when I'm falling asleep my heart rhythm races suddenly, which awakes me and I need to sit down or stand up in order to get back to normalcy. I hope you will not have this, it's really difficult to sleep and I'm completely exhausted.
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Just a few days ago I got quite scared with how fast and strong my pulse became after a short episode of arousal (around 15 minutes, happened while watching a movie).
And a new problem appeared since last January, first by short periods but now it's becoming permanent, it seems: when I'm falling asleep my heart rhythm races suddenly, which awakes me and I need to sit down or stand up in order to get back to normalcy. I hope you will not have this, it's really difficult to sleep and I'm completely exhausted.
That happens me too some nights, and often I get a pulse that is like 6 rapid beats and 3 slow beats and continues like that. It seems to be worse when I lie on the right side. Sometimes deep breathing seems to help, but sometimes not.
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Hi Iron Feather,
Thanks for having taken the time to create such a detailed thread.
Hi, Quantum! You're welcome, I hope it can help shed some light on this syndrome. I trust that combining the knowledge of all our symptoms and medical test results we will be able to pinpoint the cause someday (I don't believe anymore that doctors will be able to help us soon, most of them just don't want to investigate). Thanks a lot for taking the time to read my thread!
Hopefully, I found that taking enough potassium (around 16 mEq) and magnesium after sports spare me that awful discomfort.
Wow, that's interesting! I took magnesium pills last summer when my tachycardia episodes started, because combining that with my muscle shaking, my cardiologist thought that I could have a low magnesium level. I didn't notice any changes, but I didn't get any adverse effects from it either, and maybe it helped prevent tachycardia sometimes. In the end, both my magnesium and potassium levels were normal, which is why I think that my shaking is caused by something in the nervous system.
Your vitamin D is very low. There is evidence now that low levels of vitamin D are linked with higher levels of inflammation. Did your MD try higher doses to raise your level to normal? Do you feel better in summer when you can have skin exposure to the sun?
I've tried a lot of different vitamin D supplements to raise my level to normal, but so far nothing has worked. I never got tested for it in my childhood, so I can't be sure if it's low because of POIS or if it's always been like that. I suspect it's related somehow, since I seem to have some kind of problem absorbing the nutrients in food (no matter how much I eat, I'm always hungry and skinny), so maybe I can't absorb vitamin D properly. Given all the digestive problems, diarrhea and probably inflammation of the intestines that I had because of eating soy without knowing I was intolerant to it, I wouldn't be surprised if my ability to absorb nutrients was compromised somehow. When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.
I do feel a lot better during the summer, but I'm not sure if it's because of the heat or the extra sunlight. I suspect it's the warmer temperatures that make me feel better, as I don't go out in the sun very often, and I've noticed that when it gets suddenly cold some of my POIS symptoms appear (this didn't happen before, it started at the same time that the exercise intolerance did), especially the feeling of having warm skin but being very cold inside, the chills, and the tightness in the diaphragm. Since the vagus nerve is responsible for regulating body temperature when it's cold, I believe it could be the culprit of my cold intolerance.
Recently I'm trying to consistently take in the sun a bit every day, for a minimum of 15 minutes, to find out if it raises my vitamin D levels (I'm also taking drops of this vitamin, that are supposedly five times the amount the body needs daily, as prescribed by a doctor).
Last week the UV radiation was so high that I got slightly sunburnt (my skin is extremely white), but it didn't give me any adverse effects, in fact I feel quite well these days apart from a permanent weakness, and I think it's because of the sunlight and the warmer temperatures (and of course, the abstinence and lack of physical exercise). My acne is also lighter than ever, almost non-existent.
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When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.
Lymphocyte or mast cell infiltrates/activation?
https://poiscenter.com/forums/index.php?topic=2695.msg39068#msg39068
Minor criteria 1 and 3 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/table/Tab3/)?
https://youtu.be/lrKqlv6VK_w?t=328
What kind of testing did they run on this sample? And how did they know there was inflammation present?
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"There are currently over 100 recognized autoimmune diseases [5], including autoimmune liver diseases. One hypothesis suggests that a condition known as ?leaky gut? may play a significant role in the development of all autoimmune diseases [6, 7, 8, 9, 10, 11, 12, 13]."
https://drruscio.com/autoimmune-liver-disease/
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What is the origin of inflammation in her gut lining? That should be the main question. And if it's the bowel prep powder why would it induce inflammation? They are using bowel prep powders with a known risk of GI inflammation? Dismissing important clues. I think you should ask the lab for the lab report directly. It needs further investigation.
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I think the main question is what comes first; the inflammation in the intestines or the inflammation from the orgasm? For classic auto-immunity I think the gut inflammation comes first (due to stress and/or inflammatory diet) but for POIS maybe the orgasm itself drains the body from certain anti-inflammatory hormones which leaves the inflammatory hormones left which cause inflammation in either the gut directly and/or indirectly by causing inflammation of the liver. When the liver fails to produce bile the bad bacteria grows which cause inflammation in the intestines. A compromised detoxification process liver further adds inflammatory substances to the blood (and intestines). Of course inflamed adrenals, thyroid, hypothalamus and enzyme producing organs would also catalyse the process but I think POIS is mainly a intestine/lives issue caused by frequent orgasms, perhaps in combination with long termed stress and wrong diet, but not those two latter alone.
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I've tried a lot of different vitamin D supplements to raise my level to normal, but so far nothing has worked. I never got tested for it in my childhood, so I can't be sure if it's low because of POIS or if it's always been like that. I suspect it's related somehow, since I seem to have some kind of problem absorbing the nutrients in food (no matter how much I eat, I'm always hungry and skinny), so maybe I can't absorb vitamin D properly. Given all the digestive problems, diarrhea and probably inflammation of the intestines that I had because of eating soy without knowing I was intolerant to it, I wouldn't be surprised if my ability to absorb nutrients was compromised somehow. When I had a colonoscopy done because of haemorrhoids, the doctor took a sample of the lining and the lab said they observed "inflammation of unknown origin", but he dismissed it saying it could be because of the bowel prep powder I had to take before the test. I'm not sure if he was right, and I wonder if there is indeed some kind of permament inflammation in there.
Hi IronFeather,
It has been shown that those with inflammation in the bowels, like those having Crohn's disease and ulcerative colitis, have a decreased ability to absorb vitamin D ( around 30% lower I think). If your doctor said you have inflammation in your intestine, that would explain at least in part your hard time raising your vitamin D to a normal level. In those who have absorption problems, like people who had a by-pass surgery of the stomach very high daily doses are given- you could discuss this with your doctor if the already higher-than-normal dose has no effect.
Of course, daily exposure to the sun is a great alternative to Vitamin D supplements.
I read you also have vitamin A low levels. Both vitamins A and D are lipophilic vitamins, meaning they are absorbed with lipids because they dissolve in lipids (fats), not in water ( the other two other lipophilic vitamins are vitamins E and K). You also say that whatever the amount you eat, you stay skinny. Have you been evaluated for lipids absorption problems?
Maybe you are already aware of it, but Vitamin D supplements work best when taken with fatty foods, to help absorption ( https://www.insider.com/vitamin-d-absorption (https://www.insider.com/vitamin-d-absorption) )
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@IronFeather:
Does the time of day affect any of your symptoms?
https://poiscenter.com/forums/index.php?topic=3456.0
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Chronic inflammation of lining of gut ---> malabsorption? Vitamin deficiencies seen in POISers a clue for this? Inflammation ---> modulation of tight junctions? Something in the mucosal layer could be hyperactive.
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Check her september 2016 data. Acetone in urine 60 mg/dL, RR: 0 - 5
She is skinny
She eats for two and always hungry
It seems she burns more fat for energy than glucose because of the ketones in her urine? Glycolysis not working correctly? Is her metabolism hijacked by a pathogen? Does POIS shift her metabolism towards ketosis? Anybody else checked for Acetone?
https://www.quora.com/What-are-all-the-causes-of-acetone-in-urine
"Acetone is one of ketone bodies formed as an alternative fuel in patients of uncontrolled diabetes mellitus (specifically in type 1). Ketone bodies are also formed in prolong starvation, renal glycosuria, glycogen storage disease, etc. In these diseases including diabetes mellitus, excessive formation of ketone bodies leads to ketonemia, which eventually results in ketonuria, i.e. appearance of ketones in urine."
https://en.wikipedia.org/wiki/Glycogen_storage_disease
Could this tell us anything about Lactic acid/Pyruvate and ATP? Any expert around that can shed light on this?
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Thank you for all the detailed charts and info, Muon. I will have to read and research a bit more on this to understand everything, as I have never studied much about chemistry or biology after high school (I studied mathematics and physics). Also, sorry (to you and everybody else here) that sometimes it's hard for me to keep up with the posts and reply to everything as quickly as I should. I'll try to reply sooner!
You could modify post 8 and extract all the abnormal results from the file like I've done in my thread.
Thanks for the suggestion, I should have done this from the beginning, considering how long the original file was. I added another file with a summary of my abnormal results a couple of days ago, in the same post. The summary is translated into English, it was doable since it was much shorter than the complete list of results.
Running around with a deficiency isn't smart either. You have a low Niacinamide = Nicotinamide level if I've read it correctly. Niacin = Nicotinic Acid.
I know... I was a bit reluctant to take this vitamin because now I'm feeling quite well compared to the nightmare of the previous months, and I didn't want to ruin it. I've been on abstinence since November and I'm not exercising either, apart from walking at a normal pace for 30 minutes every day so I don't ruin my body completely. This way at least I don't get tachycardia episodes, but my shaking with any effort and the general weakness and tiredness remain. So, I've decided to try and take a B3 supplement and see what happens.
Hmm, nicotinamide and nicotinic acid are different, but shouldn't they be equivalent, metabolically speaking? Doesn't the body convert one into the other and vice versa? I suppose that, if I have a low level of nicotinamide, I should also have a low nicotinic acid level, unless something is wrong in the conversion process. Is it important in which form I take the vitamin? The one I was going to try comes in the form of inositol hexanicotinate (it's the flush free B3 supplement by FairVital), 250 mg per pill. They also have another B3 supplement, in the form of nicotinamide, with 100 mg per pill, so I'm not sure if it would be better to try this one first even if it's not flush free, because of the lower dose. I will update the thread as soon as I'm taking it if I experience any improvement or worsening.
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Will the Th1/Th2 (IFN-g/IL-4) balance still be measured?
Sadly, no. The lab told me that I should have requested a preauthorisation from my medical insurance company, otherwise they won't cover it, but they didn't tell me this until it was too late. I'm going to start making a list of all the parameters I want to measure the next time I get a blood test done, and see if I can find another doctor to prescribe it in the summer. The doctor I was going to is already tired of me and hinting at psychological issues being the cause of my symptoms, so I won't visit him anymore. I guess he just wants to get rid of a problem he can't solve.
So far I have in my list Th1/Th2 (IFN-g/IL-4), IGF-1, leptin, tryptophan and serotonin. And of course my chronically low vitamin D, and nicotinamide too, if I start taking it. I checked with the lab and they can measure all of these, as long as the insurance company authorises it. If not, I could pay for it myself, I'm willing to do it unless it is far out of my budget.
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Hi IronF, what induce full blown pois in your case, is this orgasam?
Do you get full pois from high sexual arousal without orgasam ?
Is orgasam crucial for full pois mode?
Hi, Hopeoneday! Back when I could practice sports, high sexual arousal always caused very mild symptoms for me, usually just a worsening of my acne, but it never made any POIS symptoms appear. Same happened with exercise itself, intense effort (like when I lifted weights or did too many push-ups) used to make my acne flare up. Now that exercise is out of the question, this seems to have changed a bit, and arousal gives me worse and more intense symptoms than before: my heart starts beating very intensely and tachycardia appears, my skin feels very warm even though I feel cold inside, my mood shifts towards a strong irritability and lack of patience with everyone, sometimes my appetite diminishes, and of course my acne flares up like usual.
But of course, it's all much worse with an orgasm. If it's only arousal, most of the symptoms go away in an hour or two, except for the temperature dysregulation and the irritability, that last for a couple of days.
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Hmm, nicotinamide and nicotinic acid are different, but shouldn't they be equivalent, metabolically speaking? Doesn't the body convert one into the other and vice versa? I suppose that, if I have a low level of nicotinamide, I should also have a low nicotinic acid level, unless something is wrong in the conversion process. Is it important in which form I take the vitamin?
They both raise NAD. There is a feedback loop running from NAD to nicotinamide. I wonder whether low nicotinamide could indicate low NAD levels. You could take one of these supplements for a while and measure your nicotinamide level again, if it's the same then you could raise the dose (you probably have some kind of malabsorption so a high dose may be needed). There is a difference in the penetration of the blood brain barrier between those forms, you could look that up, I don't have numbers for you. Side note: I wonder if butyrate could help you.
Regarding parameters for blood tests; Just because I have some parameters in mind doesn't mean these are the best candidates. There are more suggestions in the comments of the laboratories thread in the research category. You could make a first selection of parameters and cut it down later. Other folks may have better suggestions. There is also some stuff in the results thread in the research category. You are basically exploring unknown grounds here. I don't want to comment anymore on this forum I'm burned out. Good luck with your journey and again much respect that you came forward with your story on this forum as a female.
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They both raise NAD. There is a feedback loop running from NAD to nicotinamide. I wonder whether low nicotinamide could indicate low NAD levels.
Right now I'm trying to find the Niacin 100 mg supplement by FairVital (the active ingredient is nicotinamide) because it's the only one that doesn't contain a huge dose of the vitamin (most seem to have 500 mg per pill). It's hard to find here, but I'm worried of what a high dose could do to me if I don't tolerate it well. I'll update the thread as soon as I'm taking it, and I'll try to measure my levels again to see if there's some obvious malabsorption going on. Regarding this, I've also contacted the lab where my gut lining sample was analyzed, and hopefully they'll send me the results at some point in the next weeks (they said they're very busy with covid tests).
You are basically exploring unknown grounds here. I don't want to comment anymore on this forum I'm burned out. Good luck with your journey and again much respect that you came forward with your story on this forum as a female.
Thank you so much, Muon. I totally understand you feeling burned out, it's so frustrating to spend so much time trying to solve this, and you've participated in this forum a lot and helped so many people with your ideas, info and suggestions, including me. Thanks a lot for all you've done. I wish you all the best and I hope we'll see you around here again!
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A few years ago I also had bad experience with complex B vitamins, but taking into account the positive experiences of other POISers I recently have started to experiment with separate vitamin B types and soon realized that some of them are actually good (B3 and B12), while biotin (B7) makes me even more ill. Unfortunately at this point it is really a trial and error situation. If you are worried about possible adverse effects you could break a pill into tiny bits and only slowly increase the dosage.
Although your case at first glance seems quite remote from mine, I still found some detail that may be in common.
At one post you mentioned that sometimes in acute POIS you have swollen nodules in your breasts. Although I am a man I often have this problem, still the cause may be different. I checked your blood tests, but I don't see if they have ever checked your estrogen level. A high level of estrogen may also cause similar problems.
https://en.wikipedia.org/wiki/High-dose_estrogen
In my early POIS I was also prone to diarrhea and feverishness, but sometime along the years this changed. Nowadays I usually have a hypothermic sensation most of the time.
Sometimes I also wake for tachycardia in the middle of the night, but for me it is not very serious (about 100 bpm at most). In my case urination and fresh air can surely help to reduce this issue.
You mentioned you don't have mind fog, but rather irritability. Actually in POIS I am quite relaxed and dull and I just can't really care about anything happening. It is true however that when I have a serious POIS I also can't enjoy anything even if it was something that I love to do otherwise.
I also tend to lose weight in acute POIS or at least I need to eat a lot to be able to maintain it. It is also interesting that I develop an unsatiable appetite at POIS onset while you completely lose it.
Although in an other post you mentioned that you are always hungry and skinny.
It may be important to point out that some of your blood tests are actually the opposite of mine. I always have a high urine specific gravity while yours is low. The absolute values are within range, but the lymphocyte/neutrophil ratio is somewhat high for me. In your case this is reversed and also shows in the absolute values. This may also mean that some of the medication I use could be detrimental for you, so be careful if you try those.
Your experience with bleach intrigued me as it may have a connection with PPAR reprogramming. I couldn't find exact proof for this, however I still found an article that seems highly interesting in regard of your case:
https://sci-hub.se/https://www.sciencedirect.com/science/article/pii/S1561541309602441
Some of your blood tests also showed a low serum iron level.
Increased production of O2– leads to H2O2, and nondetoxified H2O2 reacts with Fe++ in a process known as the Fenton reaction to produce toxic ROS. Active neutrophils show high myeloperoxidase (MPO) activity in cardiac tissue, which indicates an inflammatory response. In our study, cardiac MPO activity was increased in both hyperlipidemic and non-hyperlipidemic ischemia/reperfusion (I/R) groups.
It also implicates hypochlorous acid in relation to activated neutrophils.
Neutrophils are major cells involved in ROS production, and they play a role in oxidative injury via the action of NADPH oxidase or the MPO system. Neutrophils produce O2?, which is a ROS. On the other hand, hypochlorous acid (HOCl) is produced largely from stimulated neutrophils via MPO, which catalyses the production of HOCl. HOCl oxidizes cellular molecules including proteins, amino acids, carbohydrates, nucleic acids, and lipids, increasing cardiac damage.
In conclusion, renal I/R injury caused cardiac damage via oxidative stress and inflammatory processes in hyperlipidemic and non-hyperlipidemic rats. Our results showed that fenofibrate treatment prevented cardiac damage induced by renal I/R in hyperlipidemic and non-hyperlipidemic rats by decreasing lipid peroxidation and protein oxidation, and increasing antioxidant enzyme activity.
This is interesting as you tend to have a low urea level, although your creatinine level looks to be alright.
Patel et al demonstrated that the levels of lipid peroxidation and myeloperoxidation, which were increased in renal I/R injury, were reduced to within normal ranges by fenofibrate. They found high creatinine and urea levels in the I/R group compared to the control group.
Fenofibrate is mainly used to reduce cholesterol, but your level is already low, which probably doesn't make it beneficial.
Even though a high level of cholesterol is a risk factor in cardiovascular diseases, however cholesterol is also a precursor for vitamin D and hormones so a low level can be detrimental as well.
Even though fenofibrate seems to be a promising drug no POISer seems to have tested it before, so nothing is really known about its effectiveness.
Just so you know fenofibrate and niacinamide are both PPARA agonists, so their effect may be somewhat similar. Of course they also have other effects as well and this is only a theory of mine so far. Recently I have tested chia seeds and they proved to be somewhat beneficial for me. Chia seeds also have a PPARA agonist activity, so it may be a safer approach to test PPARA agonists, rather than to go with niacinamide right away.
A high monocyte count was also implicated in your case. This may also explain how your Helicobacter Pylori problem got resolved.
In the human organism, HOCl is formed in the reaction of H2O2 with chloride (Cl?) catalyzed by myeloperoxidase (MPO) from phagocytic cells, viz., neutrophils and monocytes. HOCl, being a powerful oxidant, plays a key role in the elimination of pathogenic microorganisms. By virtue of its high reactivity, HOCl comes into contact with many biologically important molecules and thus exerts cytotoxic effects by provoking the development of many severe conditions associated with inflammation.
Activated neutrophils are able to generate in vitro up to 100?uM HOCl. However, the local level of HOCl in vivo can be significantly higher. Indeed, the local concentration of HOCl in the inflammatory focus, calculated on the basis of the data given in, can reach 25-50?mM. Taking into account the potential for the formation of such high local concentrations of hypochlorous acid during a respiratory explosion, it can be assumed that even a large number of HOCl interceptors present in the blood plasma do not guarantee complete protection of RBC from HOCl-induced hemolysis.
Indeed, similar to ascorbate and Trolox, vitamin E, taurine, flavonoids exert pronounced antioxidant effect by virtue of their ability to prevent RBC lysis in oxidative stress. The mechanism of this effect consists in inhibition of lipid peroxidation and protection of SH-groups of RBC proteins from oxidation.
https://www.hindawi.com/journals/omcl/2019/2798154/
Another study further suggested that oxidative stress and inflammation are interrelated as oxidative stress resulting from high ROS can precipitate the formation of inflammation by increasing the gene expression coding for inflammatory proteins, including NF-kB, peroxisome proliferator activator receptor gamma (PPARG), and activator protein 1 (AP-1). Consequently, inflammatory chemokines and cytokines are produced to induce inflammation. On the other hand, inflammation can increase ROS production via several signaling cascades. Polymorphonuclear neutrophils (PMN) is an immune cell that is largely involved in inflammatory processes. During inflammation, they congregate the gp91-phox, which is a catalytic subunit of NADPH oxidase 2 (NOX) and generate more ROS, including hydroxyl radical, superoxide anion, and hypochlorous acid, thereby enhance inflammation through mitogen-activated protein kinase (MAPK), protein kinase C (PKC), and c-Jun-N-terminal kinase (JNK) pathways. Activation of these signaling cascades lead to production of more inflammatory chemokines and cytokines. Therefore, this forms a vicious cycle leading to chronic inflammation and eventually a range of medical conditions, including cardiovascular diseases, neurodegenerative diseases, and cancers.
https://www.mdpi.com/2079-7737/10/4/287/htm
You could also try some potent antioxidants as they are ROS scavengers. Some POISers had success with Sulforaphan, NAC and glutathione.
I am not sure if an iron supplement would be beneficial for you as it could increase ROS production according to the Fenton reaction.
My personal recommendation would be saffron tea as it has many health benefits (e.g. antioxidant). Even though you don't have the mind fog symptom, it may still help you.
Saffron also down-regulates myeloperoxidase (MPO):
In addition, saffron down-regulates the key pro-inflammatory enzymes such as myeloperoxidase (MPO), cyclooxygenase-2 (COX-2), inducible nitric oxide synthase (iNOS), phospholipase A2, and prostanoids.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6535192/
If you are worried about any adverse reaction, you could start with as few as one stigma and slowly raise the number of pieces. About 10-30 stigmas should show a benefit, otherwise it may be not effective for you.
In one of your laboratory tests they actually measured myeloperoxidase, which proved to be negative. You were also feeling very well at the time, which may mean that the measurement was not representative for your POIS state. If saffron proved to be effective this may still worth further consideration.
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When we came back home, I felt strange. It's a very confusing feeling to describe: almost as if my body "didn't need to breathe", or forgot how to regulate the breathing pattern. I could hold my breath and feel no need to breathe in a long time. I had to "breathe manually", which led to hyperventilation and panicking. I had a few attacks like this during the next weeks, but after that it resolved spontaneously, even though it happened a few times in the next years, especially on very hot days in the summer (my favorite weather).
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
It felt as if my movements weren't smooth anymore, but instead made up of a series of minuscule discrete jolts, and I couldn't even form a tight fist with my hand without my arm shaking. I couldn't tense any muscle without it shaking. It was crazy.
As for sigma receptors, I'm a bit worried. When I read that "physiologic effects when the sigma-receptor is activated include hypertonia, tachycardia, tachypnea, antitussive effects, and mydriasis, it resembles some of my symptoms." (wiki (https://en.wikipedia.org/wiki/Sigma_receptor))
They are also involved in breast cancer.
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https://poiscenter.com/forums/index.php?topic=3669.msg41606#msg41606
Inflammation in colon, trouble with Cow and Soy milk:
https://en.wikipedia.org/wiki/Malabsorption#Causes
Edit: IF's July 2018 data indicates abnormal platelets, Prothrombin time and INR. Something wrong with coagulation?
https://en.wikipedia.org/wiki/Coagulation
https://en.wikipedia.org/wiki/Prothrombin_time
https://en.wikipedia.org/wiki/D-dimer
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The trembling you mention after exercise and muscles not responding properly as discussed in the exercise intolerance thread could be related to a channelopathy. Immune cells might behave abnormal due to this. The triggery behaviour seen overal is something you see in MCAD and channelopathies. More of your symptoms do overlap with mine, maybe I will list them later.
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I know there's something going on with potassium in my case, as since this worsening happened I've had intense cravings of specific foods, that I could not explain, but later realized were all foods that are high on potassium (potatoes and bananas, mostly).
The sigma-1 receptor as key common factor in cocaine and food-seeking behaviors (https://jme.bioscientifica.com/view/journals/jme/63/4/JME-19-0138.xml)
Some POISers mention food seeking behaviour in POIS mode especially junk food. Cocaine shuts this Ghrelin(?) mediated behaviour down via Sigma-1 receptor agonism. POIS itself could be an antagonist of Sigma-1 receptor.
Fox improved on banana's (potassium?). He had problems with swallowing food as a kid, this could indicate channelopathy.
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Edit: IF's July 2018 data indicates abnormal platelets, Prothrombin time and INR. Something wrong with coagulation?
Absolutely! POIS = Thick blood. I've had my blood microscoped at one of the expert doctors here and the result clearly showed that my blood was sticky and thick. That means that the platelets are attaching on top of eachother like a roll of coins (which I clearly saw). He said this is typhical for chronic ill patients and its a result of a chronical inflammation or infection. My chineese doctor also sais my blood is thick and thats the cause of all my health issues.
It seems that the substance that make the paletes stick together and become "thick blood" is called fibrin. The sticky fibrin is involved in wound healing and cell repair, but when overproduced (in chronic inflammation) it makes the blood thick which makes it not functioning properly and cause issues like headache, varicose veins, slow wound healing etcetera. The plaletes stack into long spikes. "This 'grainy' blood now rubs against your arteries sensitive lining, doing damage every time your heart beats". This makes sense! On POIS the body (blood vessels, organs, brain etcetera) becomes inflamed so more fibrin is produced untill the blood becomes sticky and thick. Imagine what damage this does if we are in a constant POIS state.
The sollution?
Well besides of working on lowering the POIS there are actually some "quick fixes" that break down fibrin (increases the fibrinolytic or antiplatelet activity) and some of those are:
- proteolytic enzymes (there are obviously products with this, see below)
- rasberries (antiplatelet activity + fibrinolytic activity)
- tomatoes (antiplatelet activity)
- green beans (antiplatelet activity)
- grapes (antiplatelet activit)
So we might use this information to make the perfect anti-POIS-symptom-smoothie! I will sure put more rasperries in mine now!
The microscope doctor also had a special drink formula with about 10 diffrent substances like vitamin c, MSM, magnesium/calcium etcetera (I can specify if someone is interested) which made the plaletes free oneself from eachother. Just 20 minutes after drinking this we looked at my blood again and it was not as sticky anymore! I felt better too. The effect lasted for some hours but the drink should be taken every day over some month for long term effect. It tasted so bad I had to stop drinking it but now I'm thinking of doing it again. POIS is still worse than the tast of that drink.
https://losethebackpain.com/hypercoagulation-hidden-heart-attack-risk/ (https://losethebackpain.com/hypercoagulation-hidden-heart-attack-risk/)
https://pubmed.ncbi.nlm.nih.gov/21311321/ (https://pubmed.ncbi.nlm.nih.gov/21311321/)
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Check for Antiphospholipid antibody syndrome which is an autoimmune condition that causes thickening of the circulating blood. Antiphospholipid antibodies are used to to diagnose this syndrome, I am positive for 1 out of 3 of the antibodies and have been positive on both times I've tested for them.
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One person with POIS on reddit improved on vitamine K which is involved in coagulation.
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I wanted to say a big thank you to everyone who has commented here so far. I haven't been able to reply in detail to the latest comments, and I'm really sorry for that. Right now my life is quite hectic, as I'm moving house, finishing a master's and dealing with all the paperwork for a PhD project, so I mostly won't be active here until September-October. When I come back I will try to update the thread with new info and reply to all of you as soon as possible!
In the meantime, I also wanted to throw an idea out there. I've been quite puzzled recently as to why bleach caused me such a catastrophic worsening of my symptoms, as well as exercise intolerance. And then I read the thread on channelopathies here, where there was a discussion on a possible channelopathy of the sodium channels. And I thought, well, isn't bleach sodium hypochlorite? I think something is indeed going on here.
And then, another reason to believe that problems with the sodium channels are involved: I realized lately that since my worsening happened I've been having weird strong cravings for certain foods, especially potatoes and bananas. I usually eat potatoes every day, but if I don't eat them in a particular day, the next morning I'm feeling worse, I tend to have a sugar crash if I let too much time pass between waking up and having breakfast, and sometimes I even feel slightly dizzy. I used to love salty foods, and now, not so much. And since potassium is a sodium antagonist...
No idea what to make of this, but something is going on here. It could explain the bleach thing somehow.
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I know there's something going on with potassium in my case, as since this worsening happened I've had intense cravings of specific foods, that I could not explain, but later realized were all foods that are high on potassium (potatoes and bananas, mostly).
The sigma-1 receptor as key common factor in cocaine and food-seeking behaviors (https://jme.bioscientifica.com/view/journals/jme/63/4/JME-19-0138.xml)
Some POISers mention food seeking behaviour in POIS mode especially junk food. Cocaine shuts this Ghrelin(?) mediated behaviour down via Sigma-1 receptor agonism. POIS itself could be an antagonist of Sigma-1 receptor.
Fox improved on banana's (potassium?). He had problems with swallowing food as a kid, this could indicate channelopathy.
In the first day of the POIS I always have trouble swallowing food especially breads it is like the first time I eat a bread in the state of POIS my neck muscles gotta get activated again like they are in lazy mode
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Moving my posts here via quotes and deleting them from the original location. They were a bit in the way of the original messages from IF's order of posts at the start of this thread.
Bleach?:
Stress, inflammation and cardiovascular disease (https://sci-hub.se/10.1016/S0022-3999(01)00302-6)
"Neurogenic inflammation may also occur when a toxin or chemical irritant to the skin stimulates sensory nerve endings with subsequent release of SP and/or other inflammatory sensory neuropeptides."
I wonder about these in your case:
Milk sensitivity + acne: IGF-1
Overproduction of lubricate + colitis: VIP
Low BMI + appetite issues: Leptin
2 Breast cancer and 1 prostate cancer cases in your family. PI3K-Akt-mTOR signaling could be involved, take a good look at figure 2:
Natural products targeting the PI3K-Akt-mTOR signaling pathway in cancer: A novel therapeutic strategy (https://sci-hub.se/10.1016/j.semcancer.2019.12.008)
mTOR activation affects mast cell function. You may want to keep those growth factors in check.
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FROM Community guidelines
Do not use POISCenter as a substitute for, or to give, medical advice
[demografx], are you saying that recommending a dietary supplement like Neuroprotek to another forum member means "giving medical advice"?
I am astounded. What would we do in this forum if we couldn't recommend supplements, vitamins and treatment ideas to each other?
I don't mean to break any forum rules, and I'm sure nor did Muon, but was screaming this in red really necessary?
[yes, IronFeather, you’re absolutely right, I’m removing Screaming Red! - :) Demo :)]
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But recommending is the job of a “live” & “known” health professional, not a distant internet user.
Even a doctor recommending only over the internet can be unethical!
This Rule has been in place here for the last 14 years, since 2007.
Thanks for explaining, demo! I understand. I just thought it would be different with vitamins and supplements, since they're technically not medications. But okay, it makes sense.
Thanks, IronFeather!
Delighted to have you participate so intimately! Really helps our understanding.
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What would we do in this forum if we couldn't recommend supplements, vitamins and treatment ideas to each other?
Excellent question, IronFeather! The way we have done this - - since 2007 - - is to simply
share our own experience of what works and what doesn’t work. This is the most convincing route, since the reader can then make up their own mind - - based on similarities/dissimilarities to the POIS sufferer sharing - - as to what might work for the reader.
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I wanted to share something that has happened to me this week, and that in my opinion confirms my intuition that something is wrong with my vagus nerve and vagal tone in general, especially since my worsening last year with the bleach.
I'm moving house right now, going back for a year to where I was born, before starting my PhD. It has been a complete mess, with people who had promised to help cancelling at the last minute, so me and my mother were left alone with the prospect of moving dozens of very heavy boxes, shelves, tables, all my gym equipment with weights and a treadmill... Considering my exercise intolerance, I was sure I was going to be extremely sick for days after this. I had got sick with a fever before from just trying to do a couple of push-ups!
Well, for the last three days I've been running up and down the stairs with heavy boxes that I could barely lift, and carrying furniture around. Zero symptoms so far, quite the opposite, I actually feel good! After thinking it over and over, the only explanation I can find is this: I've been talking the whole time while I did all these things. And talking stimulates the vagus nerve! I believe my exercise intolerance is due to my vagus nerve not working properly, so that it's unable to control inflammation.
As soon as my exams are over in September/October, I'm going to test this hypothesis further, maybe this is a crazy idea, but I could maybe build up exercise tolerance again, exercising progressively while stimulating the vagus nerve?
However, my muscle shaking remains the same. Well, actually I believe it has decreased slightly in intensity, but it could be just my wishful thinking.
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…I could…build up exercise tolerance again…
I have suffered from exercise intolerance all my life!
ps - IronFeather, I wrote you a message about the vagus nerve, it’s in your PM inbox
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Another possibility is that the positive social interaction resulted in a change in your brain neurotransmitter levels. Assuming you were talking to someone besides yourself ;)
I have also noticed a profound improvement in my condition after a chatty dinner party or a night talking to friends. I will be interested to hear your resultd from Vagus nerve exercise without any social interaction.
Anecdotally, moving house also leaves me bed ridden for days with POIS-like symptoms.
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Same thought as Drop, and same experience with chatty dinner party.
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Well, for the last three days I've been running up and down the stairs with heavy boxes that I could barely lift, and carrying furniture around. Zero symptoms so far, quite the opposite, I actually feel good!
Factors contributing to symptom reduction
POTS
- Intens (heavy weights) body building exercises (most of them in flat or inclined position). Short powerful movements, almost explosive with Reps between 3-5. The trick is you need to induce a pump. Need to add more details
Mother:
July 2020: She had to push against a mobile caravan for a short time window with alot of force and felt immediately better afterwards.
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social interaction is very anti-pois
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ps - IronFeather, I wrote you a message about the vagus nerve, it’s in your PM inbox
Thank you, demo! That theory about a radiculopathy being the cause of POIS seems very interesting to me. I know that I do have at least one pinched nerve, as I can't lie on my left side without feeling a sudden searing pain after a while, and it's much worse during POIS. And in that region, which is a small area on the left side of my chest, I have a permanent feeling of partial numbness.
But if this was indeed a radiculopathy, couldn't it be easily cured? Wouldn't it show on MRI scans?
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Factors contributing to symptom reduction
POTS
- Intens (heavy weights) body building exercises (most of them in flat or inclined position). Short powerful movements, almost explosive with Reps between 3-5. The trick is you need to induce a pump. Need to add more details
Mother:
July 2020: She had to push against a mobile caravan for a short time window with alot of force and felt immediately better afterwards.
The same thing happens to me, inducing a pump makes me feel immensely better. Example: a couple of weeks ago I was in the middle of a POIS episode, feeling weak and feverish, about to have dinner but with zero appetite. A person I know called me on the phone, said something offensive, and I completely lost it. I felt an immense surge of adrenaline, saw red and started screaming at them at the top of my lungs. After that I could eat my dinner and felt quite good, even though the fever didn't go away until two days later. But the feeling of sickness certainly did.
Something seems to be working at a minimum level during POIS, and things like these can reactivate it. Same with eating spicy foods: eating an entire onion, and rice with pepper (on separate occasions!) had the same effect on me.
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ps - IronFeather, I wrote you a message about the vagus nerve, it’s in your PM inbox
Thank you, demo! That theory about a radiculopathy being the cause of POIS seems very interesting to me. I know that I do have at least one pinched nerve, as I can't lie on my left side without feeling a sudden searing pain after a while, and it's much worse during POIS. And in that region, which is a small area on the left side of my chest, I have a permanent feeling of partial numbness.
But if this was indeed a radiculopathy, couldn't it be easily cured? Wouldn't it show on MRI scans?
No idea, IronFeather. You clearly know much more about this than I do!
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No idea, IronFeather. You clearly know much more about this than I do!
Oh, thank you but I doubt it, I wish I knew more, but I'm sure that working all together we can figure out important things! :)
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No idea, IronFeather. You clearly know much more about this than I do!
Oh, thank you but I doubt it, I wish I knew more, but I'm sure that working all together we can figure out important things! :)
That’s the spirit of this forum I hope we can all achieve.
:) :)
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A person I know called me on the phone, said something offensive, and I completely lost it. I felt an immense surge of adrenaline, saw red and started screaming at them at the top of my lungs. After that I could eat my dinner and felt quite good, even though the fever didn't go away until two days later. But the feeling of sickness certainly did.
This happened to my mother at multiple occasions, same scenario. Overlap of mechanism seems to be involved here. It would interesting to compare genetic profiles.
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Factors contributing to symptom reduction
POTS
- Intens (heavy weights) body building exercises (most of them in flat or inclined position). Short powerful movements, almost explosive with Reps between 3-5. The trick is you need to induce a pump. Need to add more details
Mother:
July 2020: She had to push against a mobile caravan for a short time window with alot of force and felt immediately better afterwards.
The same thing happens to me, inducing a pump makes me feel immensely better. Example: a couple of weeks ago I was in the middle of a POIS episode, feeling weak and feverish, about to have dinner but with zero appetite. A person I know called me on the phone, said something offensive, and I completely lost it. I felt an immense surge of adrenaline, saw red and started screaming at them at the top of my lungs. After that I could eat my dinner and felt quite good, even though the fever didn't go away until two days later. But the feeling of sickness certainly did.
Something seems to be working at a minimum level during POIS, and things like these can reactivate it. Same with eating spicy foods: eating an entire onion, and rice with pepper (on separate occasions!) had the same effect on me.
I have experienced the same thing with adrenaline rushes and feeling better after. Weirdly another thing that will override a horrible POIS episode is crying, but it has to be substantial crying… I’ve noticed that if something causes me to heave-cry, it almost clears up all of my symptoms instantaneously afterwards. No clue why, but my guess is it resets something in the parasympathetic nervous system.
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…Weirdly another thing that will override a horrible POIS episode is crying, but it has to be substantial crying… I’ve noticed that if something causes me to heave-cry, it almost clears up all of my symptoms instantaneously afterwards. No clue why, but my guess is it resets something in the parasympathetic nervous system.
Interesting! The same thing happens to me in prolonged, ultra-anxious situations
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If something makes me extremely angry or anxious or frustrated to the point where I wanna scream out of my lungs and hit everything and even more so if I actually do it I too feel improvement in brain fog, fatigue, etc. everything, in POIS it is like my body is extremely overrelaxed
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I wonder whether your exercise intolerance may stem from the brain. Could your breathing problem in the past, during hot weather (had this myself), be linked to the middle of the brain? Is a certain section of your brain underperforming?
https://poiscenter.com/forums/index.php?topic=2545.msg42629#msg42629
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…a couple of weeks ago I was in the middle of a POIS episode…
IronFeather, since I started with this forum in 2007, I have had a strong feeling that semen (refractory speed) is very much implicated in male POIS.
If I’m proven right about male semen, do you think that there might be a comparable equivalent that is true for female POIS?
Many thanks. You have done a lot for this forum!
Best,
Demo
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I wonder whether your exercise intolerance may stem from the brain. Could your breathing problem in the past, during hot weather (had this myself), be linked to the middle of the brain? Is a certain section of your brain underperforming?
https://poiscenter.com/forums/index.php?topic=2545.msg42629#msg42629
I've been thinking about this a lot, but I'm not really sure. When my symptoms worsened last year after using bleach at home, I felt a weird sensation in the middle of my head all the time (for 7-8 months), something I'd never experienced before and that felt as if a balloon was sitting in the middle of my brain. When this feeling intensified I felt dizzy or nauseous, in fact, I started feeling slightly dizzy some weeks before the exercise intolerance appeared, it was the first symptoms that alerted me that something was happening. However, I wonder if it's really in the brain of if it's actually the pituitary gland. I've been suspecting for a long time that there's something wrong with the hypothalamus-pituitary-adrenal gland axis, and that the involvement of the adrenal glands might be the reason why stress is much more detrimental for us than for healthy people.
The reason why I first thought about the pituitary is because, every time I feel this strange sensation of not being able to breathe properly, something in the back of my nose swells, so noticeably that my voice changes as it would with a stuffy nose, and my family always comments on it. I wonder if it's the pituitary gland malfunctioning or being overstimulated for some reason. Also, not sure if I've said this before, but when I was 17 years old I suddenly developed a very heightened sense of smell, that has remained very sharp ever since (for example, I can tell when a bottle of water has been exposed to sunlight because the water smells differently, I can smell what my neighbor is cooking 30 meters away with the windows closed, and recently I realized I can tell if a house uses electricity or gas to heat the water because it smells different...).
Maybe something isn't working properly in the nervous system, and this caused your temporary lack of tension in facial muscles, as well as the involuntary shaking we both get when tensing a muscle? (I think you said you had this too). In my case, I hadn't ever experienced this before my worsening, it appeared at the same time than my exercise intolerance, so I believe it must be related.
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If something makes me extremely angry or anxious or frustrated to the point where I wanna scream out of my lungs and hit everything and even more so if I actually do it I too feel improvement in brain fog, fatigue, etc. everything, in POIS it is like my body is extremely overrelaxed
Same! Recently I've been having trouble with feeling extremely overrelaxed or weirdly anxious when I'm sick with POIS, sometimes alternating between both states. Some days, when I'm about to fall asleep in bed, I awake with a jolt, feeling short of breath, sort of having to remind my own body to breathe, as if it had forgotten to breathe deep enough while falling asleep. Sometimes after this happens it all shifts in the opposite direction and I feel anxious, jittery and cold for no reason. I usually manage to stop both symptoms by wrapping myself in very warm clothes or blankets and breathing deeply and slowly (diaphragmatic breathing, my guess it that is stabilizes the vagus nerve).
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Yes, I've heard that deep breathing is very stabilising for the nervous system, and heart beat. its also oxygenationg the body.
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. Deficiencies of any theese hormones is a sign of comprimised function in the pitutary and hypothalamus:
Adrenocorticotrophic hormone (ACTH) (targets the Adrenals)
Thyroid-stimulating hormone (TSH) (targets the Thyroid, temperature controlling, heart rate)
Luteinising hormone (LH) (targets the testes)
Follicle-stimulating hormone (FSH) (targets the testes)
Prolactin (PRL)
Growth hormone (GH) (Stimulates growth and repair)
Melanocyte-stimulating hormone (MSH)
Antidiuretic hormone (ADH) (Controls the blood fluid and mineral levels in the body by affecting water retention by the kidneys. This hormone is also known vasopressin or argenine vasopressin (AVP)). Deficiency leads to dryeness, low blood pressure and varicose veins.
Oxytocin (anabolic hormone that heals osteoporosis)
Corticotropin-releasing hormone (helps regulate metabolism and immune response by working with the pituitary gland and adrenal gland to release certain steroids)
Gonadotropin-releasing hormone (instructs the pituitary gland to release more hormones that keep the sexual organs working)
Prolactin-controlling hormones
Thyrotropin-releasing hormone (activates the thyroid, which releases the hormones that regulate metabolism, energy levels, and developmental growth)
You can answer the poll here. (https://poiscenter.com/forums/index.php?topic=3754.0)And please do my other polls listed in my personal history here (https://poiscenter.com/forums/index.php?topic=81.msg37880#msg37880).
Does anyone have any idea of exactly what substance released from the brain that is the cause of the instant headache that comes seconds after orgasm?
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Being a woman, I can't say I've experienced NE, but I've had orgasms while asleep in the past. It doesn't happen frequently, only when I've been especially frustrated with abstinence. For me, they don't cause any symptoms at all. However, arousal does cause mild symptoms when awake.
I believe the reason why they don't make me sick is because, when they happen and I wake up afterwards, I don't experience any of the physical signs of arousal or sexual activity, I haven't produced any fluid and there haven't been any physical changes whatsoever. It's as if it was only in my brain, and my body was disconnected, even if all the sensations feel completely real in the dream. The only downside is that the thoughts remain and it's much easier to relapse the day after. I wonder if it works like this for anyone else.
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IronFeather, since I started with this forum in 2007, I have had a strong feeling that semen (refractory speed) is very much implicated in male POIS.
If I?€™m proven right about male semen, do you think that there might be a comparable equivalent that is true for female POIS?
Many thanks. You have done a lot for this forum!
Best,
Demo
Honestly, I've been thinking about this quite a lot recently. I'm not so sure I believe that a semen allergy could be the underlying cause of POIS, since many of us experience similar symptoms with other triggers that aren't related to sex, such as strong fear/stress, exercise, or certain postures. But I do believe there is something going on with the refractory period. Women aren't supposed to experience it, but since my POIS worsened last year and I developed exercise intolerance, I experience a sort of refractory period too, as if something was depleted and the 'circuitry' of arousal didn't work properly until some restoring was done. It doesn't happen every time, but it's a new thing for me, and sometimes lasts for days.
I'm puzzled by the fact that the release of pre-ejaculate causes POIS symptoms for some people here. It appears to indicate that an allergy could indeed be involved, but it could also be because of some nerves being stimulated when arousal happens, if there is something wrong with them, or because of the spike in sexual hormones, if the adrenal glands aren't working properly or these hormones can't be properly metabolized.
If there is indeed an allergy going on, the only thing I could think of that would be an equivalent in females would be the fluid produced by the Skene's glands. Since they apparently correspond to the so called 'G-spot', if there is something wrong with them this could maybe also explain why women with POIS seem to experience the female equivalent of premature ejaculation (I know it is an extremely sensitive spot for me). Also, they are called 'the female prostate', so maybe this could be the connection with male POIS. I found this article very interesting:
https://www.ajog.org/article/S0002-9378(02)70196-8/fulltext
Especially, I was surprised by this paragraph, there might be some important clue here:
There have been numerous pathologic studies that in some way support the conclusion that what has been called Skene's or paraurethral ducts and glands are, in fact, not a vestigial homolog of the male prostate but, instead, a "small, functional organ that produces female prostatic secretion and possesses cells with neuroendocrine function, comparable to the male prostate".
Thanks for all you've done for this forum too, demo, I don't know what we would do if this place didn't exist! :)
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If something makes me extremely angry or anxious or frustrated to the point where I wanna scream out of my lungs and hit everything and even more so if I actually do it I too feel improvement in brain fog, fatigue, etc. everything, in POIS it is like my body is extremely overrelaxed
Same! Recently I've been having trouble with feeling extremely overrelaxed or weirdly anxious when I'm sick with POIS, sometimes alternating between both states. Some days, when I'm about to fall asleep in bed, I awake with a jolt, feeling short of breath, sort of having to remind my own body to breathe, as if it had forgotten to breathe deep enough while falling asleep. Sometimes after this happens it all shifts in the opposite direction and I feel anxious, jittery and cold for no reason. I usually manage to stop both symptoms by wrapping myself in very warm clothes or blankets and breathing deeply and slowly (diaphragmatic breathing, my guess it that is stabilizes the vagus nerve).
This almost exactly describes some of the sleeping problems I have had - at night after POIS episode I feel extremely over-exhausted, it’s like my body starts to fall asleep and then forgets to breathe and I wake up gasping. Rinse and repeat the entire night until about 3 or 4 am when it stops - and I’m a wreck by then And this never happens to me on non-POIS nights. Glad to hear the deep-breathing helps!
Weirdly since I’ve started taking aged garlic extract, this symptom has completely vanished, after suffering with it for 3 years.
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I'm not so sure I believe that a semen allergy could be the underlying cause of POIS…
Me, neither!
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I wonder whether your exercise intolerance may stem from the brain. Could your breathing problem in the past, during hot weather (had this myself), be linked to the middle of the brain? Is a certain section of your brain underperforming?
https://poiscenter.com/forums/index.php?topic=2545.msg42629#msg42629
I've been thinking about this a lot, but I'm not really sure. When my symptoms worsened last year after using bleach at home, I felt a weird sensation in the middle of my head all the time (for 7-8 months), something I'd never experienced before and that felt as if a balloon was sitting in the middle of my brain. When this feeling intensified I felt dizzy or nauseous, in fact, I started feeling slightly dizzy some weeks before the exercise intolerance appeared, it was the first symptoms that alerted me that something was happening. However, I wonder if it's really in the brain of if it's actually the pituitary gland. I've been suspecting for a long time that there's something wrong with the hypothalamus-pituitary-adrenal gland axis, and that the involvement of the adrenal glands might be the reason why stress is much more detrimental for us than for healthy people.
The reason why I first thought about the pituitary is because, every time I feel this strange sensation of not being able to breathe properly, something in the back of my nose swells, so noticeably that my voice changes as it would with a stuffy nose, and my family always comments on it. I wonder if it's the pituitary gland malfunctioning or being overstimulated for some reason. Also, not sure if I've said this before, but when I was 17 years old I suddenly developed a very heightened sense of smell, that has remained very sharp ever since (for example, I can tell when a bottle of water has been exposed to sunlight because the water smells differently, I can smell what my neighbor is cooking 30 meters away with the windows closed, and recently I realized I can tell if a house uses electricity or gas to heat the water because it smells different...).
Maybe something isn't working properly in the nervous system, and this caused your temporary lack of tension in facial muscles, as well as the involuntary shaking we both get when tensing a muscle? (I think you said you had this too). In my case, I hadn't ever experienced this before my worsening, it appeared at the same time than my exercise intolerance, so I believe it must be related.
I was reading this highly interesting study when I recalled this post and thought this could be of interest to you and others.
Hyperalgesia is a cardinal symptom of opioid withdrawal. The transient receptor potential vanilloid 1 (TRPV1) is a ligand-gated ion channel expressed on sensory neurons responding to noxious heat, protons, and chemical stimuli such as capsaicin. TRPV1 can be inhibited via mu-opioid receptor (MOR)-mediated reduced activity of adenylyl cyclases (ACs) and decreased cyclic adenosine monophosphate (cAMP) levels. In contrast, opioid withdrawal following chronic activation of MOR uncovers AC superactivation and subsequent increases in cAMP and protein kinase A (PKA) activity.
The cAMP-PKA pathway is important in pain sensitization induced by opioid withdrawal in the central nervous system. Such cAMP superactivation was found to increase synaptic as well as glutamatergic presynaptic transmission in brainstem neurons.
Moreover, enhanced PKA activity has been shown to increase neuronal action potential rate leading to hyperexcitation of midbrain neurons during opioid withdrawal.
https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/S0304395913000110
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This almost exactly describes some of the sleeping problems I have had - at night after POIS episode I feel extremely over-exhausted, it’s like my body starts to fall asleep and then forgets to breathe and I wake up gasping. Rinse and repeat the entire night until about 3 or 4 am when it stops - and I’m a wreck by then And this never happens to me on non-POIS nights. Glad to hear the deep-breathing helps!
Weirdly since I’ve started taking aged garlic extract, this symptom has completely vanished, after suffering with it for 3 years.
Wow, that sounds terrible, I feel lucky that it normally stops for me after some deep breathing and laying face down or on my right side. I'm glad that taking aged garlic extract solved it for you! I wonder why that might be, do you have any theory as to why it worked? I suppose you're taking it in capsules? I recently bought black garlic but I haven't tried it yet, and anyway I'm not quite sure if it is the same thing than aged garlic or not.
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I'm not so sure I believe that a semen allergy could be the underlying cause of POIS…
Me, neither!
Do you believe, then, that it could have something to do with the refractory period, as in, something gets depleted and the body is sick until the levels of that substance of hormone are restored? There's a refractory period for neurons, too, and it involves the depolarization of the neuron's membrane via closing of the Na+ channels... Just an idea, but sodium is present here, and also in bleach, the substance that damaged me so badly. Maybe there's a connection.
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Do you believe…that [POIS] could have something to do with the refractory period…
Always have.
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I was reading this highly interesting study when I recalled this post and thought this could be of interest to you and others.
Hyperalgesia is a cardinal symptom of opioid withdrawal. The transient receptor potential vanilloid 1 (TRPV1) is a ligand-gated ion channel expressed on sensory neurons responding to noxious heat, protons, and chemical stimuli such as capsaicin. TRPV1 can be inhibited via mu-opioid receptor (MOR)-mediated reduced activity of adenylyl cyclases (ACs) and decreased cyclic adenosine monophosphate (cAMP) levels. In contrast, opioid withdrawal following chronic activation of MOR uncovers AC superactivation and subsequent increases in cAMP and protein kinase A (PKA) activity.
The cAMP-PKA pathway is important in pain sensitization induced by opioid withdrawal in the central nervous system. Such cAMP superactivation was found to increase synaptic as well as glutamatergic presynaptic transmission in brainstem neurons.
Moreover, enhanced PKA activity has been shown to increase neuronal action potential rate leading to hyperexcitation of midbrain neurons during opioid withdrawal.
https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/S0304395913000110
Hmm, this is really interesting. I feel pain much more intensely during POIS than in a normal state, but I always believed it happened because of a generalized inflammatory response, that might affect the nerves or their sensitivity. I wonder if there is also something going on with receptors in the nerve fibers and/or brain. This theory seems to be supported by my muscle shaking, that can't come from the muscles themselves, as there's apparently nothing wrong with them. I'm planning on getting some test done soon to measure this shaking and find out if there's nerve damage, but I'll have to find a good doctor first.
When I'm out of POIS I'm not too sensitive to pain, in fact I'm quite masochistic actually. I think I'm addicted to the endorphin rush that pain causes, which is probably the reason why I loved sports and strength training so much.
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Do you believe…that [POIS] could have something to do with the refractory period…
Always have.
In my case, I believe refractory sluggishness is the culprit. Recently, my CPAP machine has improved my POIS enormously (and joyously!) I believe my newfound energy is speeding up the refractory process - - along with my TRT treatment.
But - - as Quantum indicates - - let’s wait a few months before declaring success.
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Yes, I've heard that deep breathing is very stabilising for the nervous system, and heart beat. its also oxygenationg the body.
I also experience the "balloon" feeling inside the head (in POIS) which feels like there is a very unpleasant pressure behind the nose, deep in the brain. I also believe it might originate from the pituitary/hypothalamus. I've made a poll about signs of decrease pituitary/hypothalamus function. My hypothesis is that an inflamed pituitary/hypothalamus is causing many of the POIS symptoms.
Exactly, that is what it feels like for me too. Since there seems to be a connection between POIS and stress (as in, stress worsens POIS for most people), and the hypothalamus links the nervous and endocrine systems by way of the pituitary gland, it does seem likely that something isn't working properly here. Plus, the hypothalamus is the part of the brain that regulates temperature and heart rate, and both parameters are normally altered during POIS. But if there's something wrong with the hypothalamus, that's a serious thing, I hope it's just being influenced by some other imbalance in the body.
Deficiencies of any these hormones is a sign of compromised function in the pituitary and hypothalamus:
Adrenocorticotrophic hormone (ACTH) (targets the Adrenals)
Thyroid-stimulating hormone (TSH) (targets the Thyroid, temperature controlling, heart rate)
Luteinising hormone (LH) (targets the testes)
Follicle-stimulating hormone (FSH) (targets the testes)
Prolactin (PRL)
Growth hormone (GH) (Stimulates growth and repair)
Melanocyte-stimulating hormone (MSH)
Antidiuretic hormone (ADH) (Controls the blood fluid and mineral levels in the body by affecting water retention by the kidneys. This hormone is also known vasopressin or argenine vasopressin (AVP)). Deficiency leads to dryeness, low blood pressure and varicose veins.
Oxytocin (anabolic hormone that heals osteoporosis)
Corticotropin-releasing hormone (helps regulate metabolism and immune response by working with the pituitary gland and adrenal gland to release certain steroids)
Gonadotropin-releasing hormone (instructs the pituitary gland to release more hormones that keep the sexual organs working)
Prolactin-controlling hormones
Thyrotropin-releasing hormone (activates the thyroid, which releases the hormones that regulate metabolism, energy levels, and developmental growth)
Thank you for all this info! I'm on the lookout for things to measure in blood tests, so I'll add these to my list and see if I can manage to measure any of them.
It's interesting that you mention the antidiuretic hormone (ADH), because most of the time, during POIS, I'm very thirsty but can't stop urinating all the time, it seems like I lose more water than the amount I'm drinking.
You can answer the poll here. (https://poiscenter.com/forums/index.php?topic=3754.0) And please do my other polls listed in my personal history here (https://poiscenter.com/forums/index.php?topic=81.msg37880#msg37880).
Done! As the polls are anonymous, I'll add my answers here too, with a bit more information:
No, I've never had them.
- Do you experience hypothalamus deficiency symptoms?
The symptoms from this list that I've experienced, and only during POIS episodes, are: feeling irritable, mood swings, weight loss, disturbances in vision, hair loss, and headache (this one happens very rarely in my case, and is most likely related to dehydration).
- Is your cortisol high or low?
Normal: 19.0 micrograms/dL (6.7-22.6 being the normal range). I only measured it once though, and I was not experiencing POIS symptoms at the time.
- What is the rise in your HR between lying down and after standing up?
I only experienced this symptom while we were using bleach at home, even though I clearly have lasting damage. At its worst, it was around 20-25 BPM. Now it almost doesn't change.
- How does your stool (poop) change during POIS?
During my first years with POIS, I often had diarrhea during my episodes. Now, when there is a change, it's towards constipation. My personal opinion on this is that the nerve fibers that control bowel movements are affected.
- Do you have any of those symptoms assosiated with EDS (Ehlers-Danlos syndrom)?
Very easy bruising of the skin. Fatigue only happens during POIS.
- Are you the youngest sibling?
I'm an only child. However I don't think it matters much.
- What's your normal blood pressure (SYS/DIA)?
I don't remember the numbers, but doctors always say they are "textbook values".
- Do you experience dryness during a period of POIS?
Less saliva (dry mouth). I always feel like I need to double my water intake during POIS (metabolism speeds up?).
- Do you have kidney problems?
No, not at all.
- How many hours on average a day, do you spend staring at a computer screen?
It depends. I almost didn't use computers until I was 17, and even now I try to stay away from phones, screens and radiation in general as much as possible. But during some periods, especially before exams, I've spent as much as 8 hours working on my laptop. Now it's usually around 1-2 hours per day, but still, some days I don't use computers at all, and I don't use a smartphone anymore.
- Do you have Small Intestinal Bacterial Overgrowth (SIBO)?
I can't be sure, but I don't think so. I usually eat a lot, I eat a varied diet (but all organic), and don't have any stomach or intestinal problems.
- Whats the duration of your POIS symptoms?
It ranges from 5 to 15 days, but usually a week.
Does anyone have any idea of exactly what substance released from the brain that is the cause of the instant headache that comes seconds after orgasm?
I don't think it's a particular substance, apparently "sex headaches" are relatively common but the causes can vary from person to person and they are more common in people already suffering from migraines. According to this site (https://www.mayoclinic.org/diseases-conditions/sex-headaches/symptoms-causes/syc-20377477#), they can be caused by an intracranial aneurysm, or inflammation, or medications... I personally don't experience this at all.
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Thanks for your answers!
Since the "ballon headache" (witch for me could be very unbearable) is the very first noticable thing that happens, I think the cause of POIS-symptoms is situated in this area - the hypothalamus/pitutary that gets inflamed and decreases its activity during the POIS-days (thats when you get dry skin etcetera).
However, this doesn't nessecarily mean that the area is unrepairable damaged. On the contary - it seems to be restoring itself completely between the POIS episodes! And at occations that I associate with non-stress (vacations, sun, relaxing, beeing away from people I dont like, and together with those I do like) I seem to have a much greater POIS resistance, or it could even be gone! ...just to appear again when I'm "back at the desk".
This make me think that there is something else messing with the hormones and that the cause of POIS might be related to stress or bad absorption of nutrients in the upper intestine (leaky gut/sibo/Chrons/IBS) catalyzed by frequent orgasm. Orgasms consumes alot of hormons so the building block is not added in the same pace as they are consumed. Thats why some members do well on eating eggs, or egg yolks, that contain building material for hormons, particularly cholesterol.
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I wonder whether your exercise intolerance may stem from the brain. Could your breathing problem in the past, during hot weather (had this myself), be linked to the middle of the brain? Is a certain section of your brain underperforming?
https://poiscenter.com/forums/index.php?topic=2545.msg42629#msg42629
I've been thinking about this a lot, but I'm not really sure. When my symptoms worsened last year after using bleach at home, I felt a weird sensation in the middle of my head all the time (for 7-8 months), something I'd never experienced before and that felt as if a balloon was sitting in the middle of my brain. When this feeling intensified I felt dizzy or nauseous, in fact, I started feeling slightly dizzy some weeks before the exercise intolerance appeared, it was the first symptoms that alerted me that something was happening. However, I wonder if it's really in the brain of if it's actually the pituitary gland. I've been suspecting for a long time that there's something wrong with the hypothalamus-pituitary-adrenal gland axis, and that the involvement of the adrenal glands might be the reason why stress is much more detrimental for us than for healthy people.
The reason why I first thought about the pituitary is because, every time I feel this strange sensation of not being able to breathe properly, something in the back of my nose swells, so noticeably that my voice changes as it would with a stuffy nose, and my family always comments on it. I wonder if it's the pituitary gland malfunctioning or being overstimulated for some reason. Also, not sure if I've said this before, but when I was 17 years old I suddenly developed a very heightened sense of smell, that has remained very sharp ever since (for example, I can tell when a bottle of water has been exposed to sunlight because the water smells differently, I can smell what my neighbor is cooking 30 meters away with the windows closed, and recently I realized I can tell if a house uses electricity or gas to heat the water because it smells different...).
Maybe something isn't working properly in the nervous system, and this caused your temporary lack of tension in facial muscles, as well as the involuntary shaking we both get when tensing a muscle? (I think you said you had this too). In my case, I hadn't ever experienced this before my worsening, it appeared at the same time than my exercise intolerance, so I believe it must be related.
Another addendum:
The olfactory system has been shown to be altered by both deficiency and excess of steroids, especially glucocorticoids. The authors reported that in patients with adrenal insufficiency, there is a marked increase in the ability to detect odorants, while in patients with adrenal hypersecretion (Cushing's syndrome), there is a decrease or absence of the ability to detect odorants.
https://www2.helsinki.fi/sites/default/files/atoms/files/ezeh_et_al_1991._steroids_and_odor_detection_dog.pdf
Although you had a normal cortisol level you may still need to consider the involvement of aldosterone.
https://en.wikipedia.org/wiki/Addison%27s_disease
https://en.wikipedia.org/wiki/Aldosterone
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I would go for a test similar as this one IF: https://poiscenter.com/forums/index.php?topic=4048.0
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Last week I found the best source of adrenal fatigue ever at the site of drlamcoaching.com (https://www.drlamcoaching.com/adrenal-fatigue/). This guy seems to be spot on everything about bad adrenals and has loads of articles about it. My printer almost got POIS by printing everything out.
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I advise you to collect the lubricating fluid secreted by vagina, then inject it into your body. .
(edit)You could work with a doctor to check if a desensitation therapy makes sense.(/edit)
All of the men in China who are undergoing semen desenz have slight sympotoms if they inject the diluted semen into their body. So I believe POIS is caused by semen or prostatic fluid or anything else allergy instead of a kind of neuropathy
For reference, Lihua's thread: https://poiscenter.com/forums/index.php?topic=4104
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I advise you to collect the lubricating fluid secreted by vagina, then inject it into your body. .
(edit)You could work with a doctor to check if a desensitation therapy makes sense.(/edit)
All of the men in China who are undergoing semen desenz have slight sympotoms if they inject the diluted semen into their body. So I believe POIS is caused by semen or prostatic fluid or anything else allergy instead of a kind of neuropathy
For reference, Lihua's thread: https://poiscenter.com/forums/index.php?topic=4104
I am sorry that I am not good at English so I used the wrong word. I mean, do a skin-prick test under the inspection of your doctor, which is relatively safe.
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Hi Iron, what i forgot to ask you.. when you do high visual sexual
arousall , than lubricating fluids is start to producing, do you
feel eny inflamation or pain i yours reproductive organs?
Do you get eny pois symptomes from that or you need
"OF" to start pois cascade and symptomes?
For exemple i did some testings, visuall arousall on porpes for 20 min,
no masturbation , no ejac... in mans, lubricating fluids in cowpers
glands is starting to produce, olsou prostate and seminal vesicles
start producing semen products.. and after this i feell
inflamation around glands sometimes and slight pain..
and this will give me 30-50 % pois symptomes withouth "OF",
i am not always get pain in glands but this will hapen after
longer period of sexual abstinence on perpos.
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Yes, I've heard that deep breathing is very stabilising for the nervous system, and heart beat. its also oxygenationg the body.
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.
You can answer the poll here. (https://poiscenter.com/forums/index.php?topic=3754.0)And please do my other polls listed in my personal history here (https://poiscenter.com/forums/index.php?topic=81.msg37880#msg37880).
Does anyone have any idea of exactly what substance released from the brain that is the cause of the instant headache that comes seconds after orgasm?
Can a MRI prove the changes before and after an O ? Pardon me if its already performed, I am not very updated with POIS Scan results
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Niacin
even though it didn't help my POIS, it completely eliminates my period pain. I used to feel pain so severe that I could barely move, for the first 5-6 hours of my period, every month. Taking one niacin pill makes it completely disappear! No idea why, but it's a life changer :)
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I spent 4 months with colitis and lost half of my weight until thankfully my mother deduced that soy was the culprit. So I believe that, if it was a true allergy, I'd have had a more intense reaction. And yes, I've never tolerated soy well, and I've had that problem for as long as I can remember.
"Thus, specific IL-10 deletion of Foxp3+ Tregs results in spontaneous colitis, highlighting the fact that IL-10 produced by Tregs is instrumental in maintaining tolerance particularly at intestinal tissues"
"This protective role is most probably lost during colitis onset, since several lines of evidence indicate that dopamine levels decrease upon intestinal inflammation; and under these conditions, low dopamine levels may stimulate both the innate and adaptive compartments to produce highly inflammatory cytokines, favoring the development of colitis."
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@Ironfeather
Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?
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@Ironfeather
Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?
It's interesting that you mention sauerkraut, because I used to love it as a kid and ate it regularly, but now it gives me diarrhea. No idea why or when this started, I realized it five years ago (before my worsening and the appearance of exercise intolerance), and all I know is that it's the same reaction I have to taking vitamin C and pollen. All three are things I used to take regularly as a kid and they gave me no issues, but now I get horrible cramps and explosive diarrhea if I eat them even once.
After a long time in the sun I feel the same way than after a long warm bath, not dizzy but more tired, especially with less strenght in the muscles and a tired/burning sensation in them when I move. I think my blood pressure lowers, but I would have to measure it to be sure. I never take showers, I'm too ticklish and hate the feeling of all those little water springs on my skin, but I usually use quite hot water when I take a bath and it does make some random parts of my skin itch sometimes (and I get very red if I scratch it even lightly, as if a tiger had scratched me). What really does get itchy almost every time is my face after washing it, whether the water is warm or cold. But I also have really bad acne since my POIS started, so that might explain something.
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@Ironfeather
Do you also get dizzy after a long time in the sun or after you eat sauerKraut?
When you take a long, very hot shower does your skin get itchy, anywhere even once?
It's interesting that you mention sauerkraut, because I used to love it as a kid and ate it regularly, but now it gives me diarrhea. No idea why or when this started, I realized it five years ago (before my worsening and the appearance of exercise intolerance), and all I know is that it's the same reaction I have to taking vitamin C and pollen. All three are things I used to take regularly as a kid and they gave me no issues, but now I get horrible cramps and explosive diarrhea if I eat them even once.
After a long time in the sun I feel the same way than after a long warm bath, not dizzy but more tired, especially with less strenght in the muscles and a tired/burning sensation in them when I move. I think my blood pressure lowers, but I would have to measure it to be sure. I never take showers, I'm too ticklish and hate the feeling of all those little water springs on my skin, but I usually use quite hot water when I take a bath and it does make some random parts of my skin itch sometimes (and I get very red if I scratch it even lightly, as if a tiger had scratched me). What really does get itchy almost every time is my face after washing it, whether the water is warm or cold. But I also have really bad acne since my POIS started, so that might explain something.
What you describe is 90% similar to my symptoms (and everyone elses with MCAS) to these foods/activities..
Intestinal problems with fermented foods and dermatological problems/sensitivity/redness with heat is very typical for mast cell diseases..
Probable that you don't notice it in the sun because you live in spain and are used to lots of sun exposure.
With your exercise intolerance ... do you get dizzy/weak and does your skin itch or sting? Did you also get insomnia after the sauerkraut or did you sleep normal 8h?
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What you describe is 90% similar to my symptoms (and everyone elses with MCAS) to these foods/activities..
Intestinal problems with fermented foods and dermatological problems/sensitivity/redness with heat is very typical for mast cell diseases..
Probable that you don't notice it in the sun because you live in spain and are used to lots of sun exposure.
With your exercise intolerance ... do you get dizzy/weak and does your skin itch or sting? Did you also get insomnia after the sauerkraut or did you sleep normal 8h?
Personally, I've never completely believed that POIS is due to MCAS, but I do see there are a lot of similarities and it makes me think that the immune system is indeed involved in this condition somehow. I wonder if it's vitamin C specifically that makes my intestines react, since both sauerkraut and pollen are high in it. MCAS seems a bit different from what I have, because I have never experienced skin symptoms like itching, redness or rashes during POIS. Same with irritation of the nose and eyes, or trouble breathing... those aren't symptoms I have. I do experience the typical air hunger feeling that people with POIS almost always report, but it doesn't correlate with low oxygen levels or constriction of the airways, it seems to be a phantom sensation and I have no idea what causes it. It isn't anxiety either, and it worsens a lot a few hours after exercise. When it's present, my vision also seems different, as if my surroundings were brighter, especially at night. I believe my pupils dilate for some reason but I'm not sure of this, it's just a hypothesis (some sort of parasympathetic nervous system activation in response to an excessive sympathetic activity?).
Don't people with MCAS usually react to foods that are high in histamine and that's the reason why they have an adverse reaction to fermented foods? I eat eggplants, avocados and spinach regularly, sometimes in really big quantities (especially eggplants, which I love), and never get any problems from them.
I've been trying to update this thread for some time, there is new info I need to add about all this, as I've experimented with new supplements and my symptoms have stabilized in a different way. I'm working on writing the update right now, hopefully I'll finish it this week.
About your last question, I don't get dizzy or weak during exercise, and my skin doesn't itch or sting, at least not that I've noticed. What happens is that I can't maintain any sustained muscled tension, my muscles shake wildly, some more than others but in any case it's very noticeable (my friends can't believe it when they see it and joke all the time asking me if I'm connected to a power outlet or calling me electric girl), and afterwards I experience high fever and episodes of tachycardia for days. It's not a matter of strength, I don't feel weaker than before (apart from the logical amount of strength that I've lost after not exercising for two years) and this shaking doesn't happen when exerting maximum force, it happens all the time when I tense any muscle. However, my muscles feel like they were made of rubber after any effort, no matter how moderate, almost as if I couldn't feel them anymore, and the shaking intensifies incredibly. I wonder if there is a circulation problem or a metabolic one at play here.
After eating sauerkraut I slept normally. The only things that affect my quality of sleep are POIS episodes and vitamin B supplements (I don't know yet which of them is the culprit, as I haven't taken them all separately, but it's not B3/niacin). Both make it difficult to fall asleep (I might take half an hour or even an hour, again I suspect sympathetic nervous system activation), make me feel very tired in the morning, and turn a normal night of sleep into endless hours of tossing and turning, asleep but aware of feeling uncomfortable and cold, with episodes of tachycardia around 3-4 in the morning, experiencing extrasystoles when I lay face up, and usually with that horrible air hunger feeling that even wakes me up sometimes. Wrapping up in a lot of blankets until I feel very warm usually makes the worst of these symptoms lessen or even disappear (circulation issue?).
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If mcas is involved in us (probbly it is),
there are no man with mcas that hawe
the same symptomes.
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About tachichardia, i discovered that is becuse of pois affect
nervous system( is this because norephiderphine spike in pois
, who knows) or because autoimune reaction that affect
ours nervous system and thus we hawe thouse symptomes.
Tachichardia in is not always the same, but i did
had a lot of bad
pois episodes where my mucules is so stiffed( internal
muscules , esophagal swalowing , pelvis flore , neck..)
Thouse inhibition of muscules, largly inhibit my guts, then food
start to ferment and produce large amoung of gass(sibo)
wich put presure on my esophagal spitcher and then lungs
and that heart(vagus nerve tachichardia) eg the you get
heital hernia from all this.
This couse tachicardia in my case.(must lerned
this in a tuff way) no doctor will tell you this.
Try to notice do you hawe hiden air in top of yours stomac.
Beacause with pois atac and nerwous system
affected ,sensitivity can produce tachichardias
(presure on spincher where dysfuntcional vagus
nerve send "wrong or write information" "to save you".
Uh, tired now ;D , maybe some words missing ;D
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I’ve spoken to a woman who had colitis. She recovered with oral FMT capsules and snake venom. Sniffing the snake venom only once changed something inside her brain and since that moment her colitis was gone.
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She sniff of her nose..
(https://cdn.vectorstock.com/i/1000x1000/12/56/funny-cartoon-cobra-vector-771256.webp)
and baaam, colitis is gone ;D
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Hi Iron, what i forgot to ask you.. when you do high visual sexual
arousall , than lubricating fluids is start to producing, do you
feel eny inflamation or pain i yours reproductive organs?
Do you get eny pois symptomes from that or you need
"OF" to start pois cascade and symptomes?
For exemple i did some testings, visuall arousall on porpes for 20 min,
no masturbation , no ejac... in mans, lubricating fluids in cowpers
glands is starting to produce, olsou prostate and seminal vesicles
start producing semen products.. and after this i feell
inflamation around glands sometimes and slight pain..
and this will give me 30-50 % pois symptomes withouth "OF",
i am not always get pain in glands but this will hapen after
longer period of sexual abstinence on perpos.
Hi Hopeoneday! I should have replied to this much sooner, I'm sorry that I haven't participated much in the forum recently. For months I've been trying to adapt to the fact that I lost most of the things I loved because of POIS (sports and music), and honestly, I haven't been feeling very happy or motivated. But I'm doing my best to carry on and enjoy and value what I still have.
Before the drastic worsening that happened to me after I started using bleach to clean at home, I never experienced any symptoms from arousal apart from my acne worsening a bit, even if the arousal was very prolonged or intense. But now I do, even five minutes of arousal cause me days of sudden constipation, heart fluttering and extrasystoles, tension in the diaphragm and abdominal muscles, a random feeling of air hunger, brain fog and horrible irritability, diminished appetite, and a severe worsening of my usual acne. The symptom intensity is probably around 60% - 70% of what I usually get after orgasm.
However, I don't get any symptoms after a wet dream, nor do I produce any fluids, even if I experience what feels like very real arousal or even an orgasm in the dream. I think this isn't the norm, and that probably this absence of a physical reaction is the reason why the symptoms don't appear. It feels as if my body was completely disconnected from my brain during those dreams, does that happen to anyone else?
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Can a MRI prove the changes before and after an O ? Pardon me if its already performed, I am not very updated with POIS Scan results
I haven't ever had an MRI scan, but I do remember that some forum member mentioned he had one and nothing was found. However, that's just a regular MRI scan performed at a random time, not before and after an O like you said. I do wonder if some physical changes would be observed if the second one is performed when the peak of the symptoms has been reached, like an enlarged pituitary gland, for example, in POISers who experience severe symptoms (I doubt anything could be seen in a scan like that in the initial stages of POIS, when the symptoms are mild). But I honestly have no idea.
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However, I don't get any symptoms after a wet dream, nor do I produce any fluids, even if I experience what feels like very real arousal or even an orgasm in the dream. I think this isn't the norm, and that probably this absence of a physical reaction is the reason why the symptoms don't appear. It feels as if my body was completely disconnected from my brain during those dreams, does that happen to anyone else?
Hi IronFeather. I believe that I can relate: with erotic dreams, in which I'm aroused to the point of orgasm, I've experienced two possible ends: either I ejaculate, and in this case my brain wakes up *during* the beginning of the ejaculation and triggers a *real* orgasm, until the end of the ejaculation - and I get classic POIS. Or something strange happens, which was the case in one or two occasions. In my dream I do begin to orgasm but it wakes me up just before the actual ejaculation happens (or just at the beginning, with only a little sperm as proof of the orgasm) and *I don't have a real orgasm* : waking up completely suppresses the orgasm and I realize I was only dreaming : I go from the middle of a dreamt orgasm to zero arousal instantaneously, my mind being as fresh and sober as if I was in the middle of a conversation with my grandmother. And I don't get POIS.
As for post-arousal symptoms, as I've narrated in my personal thread, I've just succeeded in suppressing them completely by taking zinc supplementation daily. It may not work for you, but for what it's worth...
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If you try to would like to try to help her, don't waste your time... she knows what she has but she just doesn't want to hear it, so in case you want to pitty her I guess she'll be enjoy it but in case you would like to stay to help her.. stay away she just likes to be miserable
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If you try to would like to try to help her, don't waste your time... she knows what she has but she just doesn't want to hear it, so in case you want to pitty her I guess she'll be enjoy it but in case you would like to stay to help her.. stay away she just likes to be miserable
Where on earth did you come from? Are you the same person than the user _kid who I was talking to before? I assume so, and that for some reason you have two usernames.
You are showing a very childish attitude here with your words, so I am not going to waste my time at all replying to you anymore. If you know what you have, what are you doing in this forum? The only person you are harming with this behavior is yourself, and I truly hope you will be able to improve in the future. You cannot tolerate that people are busy and not able to reply to you right away, so you have to delete your post where you were posing me questions (in a very aggressive and self-righteous way, I must say) and then say this about a person you don't know in the slightest? I have a life, and it's going to continue being that way, so if the fact that you and your theories are not the center of the world bothers you, and if you can't stand people contradicting you, please stay away from my thread until you have something constructive to say.
I'm not going to have MCAS just because it would support your little theory. You are interpreting everything I say in a skewed and biased way, and your ideas are simply incorrect and don't match at all the reality of the symptoms I experience. I don't have any allergic reaction during POIS and I don't have MCAS either.
Good luck, I hope you find a cure for yourself.
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If you try to would like to try to help her, don't waste your time... she knows what she has but she just doesn't want to hear it, so in case you want to pitty her I guess she'll be enjoy it but in case you would like to stay to help her.. stay away she just likes to be miserable
Hi, _kid,
One of the rules on this forum is to be nice and supportive. This comment of yours is not. Feel free to review the poiscenter.com rules at https://poiscenter.com/forums/index.php?topic=3774.0 (https://poiscenter.com/forums/index.php?topic=3774.0)
There are a lot of hypotheses about the pathophysiology of POIS. The similarity between POIS and MCAS is one hypothesis among hundreds of others. Nothing has been proven yet about any hypothesis on POIS. So, no one can say anything definitive about it.
Moreover, we are not allowed to diagnose and give medical advice to others on the forum, which is another rule of poiscenter.com. You can share what you think about your own case, and share what works for you, and that is as far as you can go. You can also present your hypothesis about POIS in general, with references, scientific explanations, and examples, and discuss this hypothesis with members interested in it. But, you cannot force your opinion on other members and have to respect their differing views. What you wrote through your kid_, on MCAS, does not respect the forum rules any more than your last message as _kid.
(note: both accounts, kid_ and _kid, are the same user).
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Look at her medical data, abnormal results. She had low urea (Should it not be high in Hyperammonia?). Acetone in urine was high 60 mg/dl (0-5). The latter can be elevated when you are on a ketodiet if I’m not mistaken. She also said she ate for two people. People complain of bad body odor, I wonder if these things are related. She is also skinny. Is the body unable to metabolize carbs properly leading to ketosis?
https://www.thehealthboard.com/what-can-cause-acetone-in-urine.htm
There are several other conditions that may contribute to the presence of ketones in a person's urine. Among them are pregnancy, breastfeeding, and sometimes even fever. Each of these conditions can temporarily raise a person’s metabolism. When this happens, a person either eats more to compensate for the body burning glucose at a faster rate, or goes into ketosis, with the accompanying presence of acetone in urine.
https://m.iliveok.com/health/smell-acetone-urine-causes-and-what-do_125852i15952.html
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Do you believe…that [POIS] could have something to do with the refractory period…
Always have.
In my case, I believe refractory sluggishness is the culprit. Recently, my CPAP machine has improved my POIS enormously (and joyously!) I believe my newfound energy is speeding up the refractory process - - along with my TRT treatment.
But - - as Quantum indicates - - let’s wait a few months before declaring success.
I have been experimenting with Cialis:
“One 2017 meta-analysis found that taking PDE5 inhibitors like Viagra, Cialis, and Levitra boosted the number of motile sperm as well as normally shaped sperm.”
I think I see POIS improvement, perhaps my refractory sluggishness - - my POIS theory since 2007 - - is speeding up?
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Caffeine pills and exercise?
Cognition and Brain Activation in Response to Various Doses of Caffeine: A Near-Infrared Spectroscopy Study (https://www.frontiersin.org/articles/10.3389/fpsyg.2020.01393/full)
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Central Sensitization Syndrome could explain some of your triggers (chemical sensitivity, exercise intolerance, POIS?).
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Further information pertaining to a possible link to hypochlorite hypersensitivity.
In your lab tests your neutrophils and leukocytes were often on the higher end, which is probably related.
In addition, environmental pollutants including formaldehyde, acetaldehyde, industrial isothiocyanate, hypochlorite, and acrolein (which is also produced during endogenous LPO processes), have been shown to cause irritation, coughing, and pain by stimulating TRPA1 through the same covalent binding mechanism.
https://www.mdpi.com/1422-0067/15/9/16430
Non-enzymatic lipid peroxidation induced by oxidants such as superoxide, hydrogen peroxide, hypochlorous acid and peroxynitrite generates reactive lipid species such as 4-hydroxynonenal (4-HNE) from polyunsaturated fatty acids (PUFA) of membrane lipid bilayers.
Experimental models of inflammatory diseases demonstrate that 4-HNE is produced by activated neutrophils which can serve as a potent chemoattractant for further leukocyte recruitment to the inflammatory foci.
https://www.sciencedirect.com/science/article/pii/S2213231716300490
Based on this it may be worthwhile to supplement plasmalogens and maybe to try some COX-2 inhibitors, which also helped several other people here.
Plasmalogens (Pls) are particularly susceptible to attack by ROS, while oxidative stress has been proposed as an additional mechanism for the Pls depletion in septic-related conditions, such as in COVID-19 severe cases. Of note, in sepsis, the Pls vinyl ether bond can be targeted by neutrophil-derived hypochlorous acid (a product of myeloperoxidase activity, highly increased in acute systemic infection in neutrophils) resulting in 2-chlorofatty aldehyde and 2-chlorofatty acid production. Increased 2-chlorofatty acid plasma levels associate with ARDS-induced mortality in human sepsis and several organ dysfunction in rats subjected to cecal slurry sepsis. In addition, in vitro and in vivo studies have shown that chlorinated lipids play an active role in the dysregulated host immune response in sepsis. For instance, 2-chlorofatty acid is a potent neutrophil chemotactic agent, which induces cyclooxygenase-2 (COX-2) expression in endothelial cells and lung alveolar cells, and disrupts the endothelial-blood barrier, including the BBB. Pls attacked by free radicals were proposed to generate precursors for chlorinated lipid production during sepsis with subsequent consequences on organ dysfunction, including in lung acute injury and ARDS.
https://www.sciencedirect.com/science/article/pii/S0361923023001272
More info on plasmalogens:
https://poiscenter.com/forums/index.php?topic=4321.msg47808#msg47808
Furthermore a probable reason for tachycardia is sepsis induced inflammation.
Patients with sepsis predispose cardiac arrhythmias because of excessive inflammation and circulating stress hormones. We identified that low mean arterial pressure, high body temperature and high procalcitonin levels were important factors in tachycardia etiology. According to our findings, there may be also a relationship between inflammation and tachycardia.
Hypotension in patients with sepsis results sympathetic nervous system activation and increase in heart rate.
It is stated that the sensitivity and specificity of procalcitonin are higher than many other mediators in defining the severe sepsis. Tachycardia is a result of endogenous mediators induced by inflammation like sepsis.
https://article.scholarena.com/Sepsis-and-Tachycardia-Etiologic-Factors-and-Effects-on-Prognosis.pdf
We show that exogenously added HOCl attacks the cellular plasmalogen pool and gives rise to the formation of 2-chlorohexadecanal (2-ClHDA). Reactive electrophile species (RES) are able to activate the cellular defense machinery, including the Keap1/Nrf2 antioxidant response, the unfolded protein response, or the heat shock response (HSR). Here, we show that 2-ClHDyA targets cytosolic and nuclear members of the HSR protein network. This is reminiscent of what has been reported for other prototypic RES like 15d-PGJ2, 4-hydroxynonenal (HNE), or acrolein that are potent inducers of the HSR.
Sepsis, a systemic inflammatory response that follows bacterial infection, is characterized by hypotension, ischemia, and multiple organ failure. Cardiac dysfunction is a consequence of sepsis and characterized by impaired contractility, diastolic dysfunction, and reduced ejection fraction.
Under septic conditions chemokine-, cytokine-, and tumor necrosis factor alpha (TNFa) release, alterations in nitric oxide (NO) production, dysfunctional Ca2+ homeostasis, activation of the complement and coagulation system, and impaired beta-adrenergic signaling contribute to organ dysfunction. As an additional culprit, myocardial metabolism shifts from fatty acid (FA) and glucose oxidation toward aerobic glycolysis and lactate production.
https://www.mdpi.com/1422-0067/21/23/9235
By the way have you by chance found any useful treatments in the meanwhile?
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Additional HOCl scavengers:
It is well known that taurine removes hypochlorous acid (HOCl) by reacting with it to form chlorotaurine, and that HOCl stress impairs SOD activity. However, sulfur-containing amino acids such as cysteine or methionine can also scavenge HOCl.
https://www.researchgate.net/profile/Masato-Higuchi-2/publication/225041917_Taurine_plays_an_important_role_in_the_protection_of_spermatogonia_from_oxidative_stress/links/00b7d514a5c0763713000000/Taurine-plays-an-important-role-in-the-protection-of-spermatogonia-from-oxidative-stress.pdf