My current experience
I have been treating myself for over a year now, but to my disappointment I haven’t made any significant progress to cure myself. The most fundamental statement I can make about POIS is that it is just too damn powerful. On one hand I find that practically every supplement is useful against POIS, on the other hand practically everything stops working or drops in efficacy after a short while. This is most usually around 1 or 2 days and sometimes a bit more, however afterwards they don’t provide the noticeable benefit that they had done initially. At least in some cases drug resistance/tolerance disappeared after an extended amount of time (several months) and once again there was a perceptible benefit for one or two days. I have to emphasize that I develop a tolerance not only to herbal remedies and pharmaceuticals, but to vitamins and minerals as well. Disregarding the tolerance issues at least the effective supplements outline the nature of the underlying inflammatory condition.
The time frame when supplements are effective is also rather inconvenient. For some reason 6.5 hours seems to be the magic number following consumption, when mostly everything shows its peak benefit. Most often there is an increase in flatulence at this time, which is clearly associated to the anti-inflammatory effect. Most interestingly as drug resistance develops not only the anti-inflammatory effect gets weaker, but the flatulence as well even if it was strong before. This peak is also when I most often get a transient anti-depressive effect. Transient means that I experience a sudden clarity and my sight changes from fuzzy to focused that lasts a few minutes, then half an hour passes and I feel just alright and then an hour or two passes and I realize that I am back in the mind-fog prison. Needless to say this makes it practically impossible to get any benefit that would last throughout the day. I take the supplements in the morning, mid afternoon and late evening before bedtime. Thus during work I would not get any benefit and only begin to feel a little better by the time I was going home, however due to work induced PEM the benefit would be often reduced. Physical fatigue and pain is usually an issue in the early afternoon and I am prone to food coma around this time. By the time the afternoon dose would be working I usually started to feel mentally fatigued and tired, which once again blunts the benefit, though at least muscle pain is usually reduced by this time and I can sometimes do exercises. Then during the night I would sometimes wake up feeling quite well from the evening dose, but after sleeping a few more hours I would more likely wake up feeling messed up as usual indicating the end of the effectiveness window.
The second principal rule is that negative effects are always stronger than positive ones. Of course fatigue is the main contributor. I find that when I don’t sleep enough my general condition is worse. Unfortunately due to POIS I am rather slow and enervated in practically everything I do and I never get ahead with anything. For this reason usually I try to save time on sleeping which is probably not a good idea, thus I only sleep about 7 hours daily, which is clearly inadequate with such a disease. I have to say that when I am tired practically nothing works and even the best supplements only have transient and reduced effects. This is also true when eating POIS mimetics as they mess up my digestion and or eyes and the damage is less repairable. Daily working and/or training and ensuing muscle pain and/or fever also turns POIS intensity up a notch. Of course sexual activity is the “best” inducer, but I have plenty of POIS symptoms even without that most of the time.
Another important finding after a year of treatment is that things that did not show promise in the first few days would not start magically working even after weeks of use. To the contrary it is more of a problem that things that worked well for the first time would usually lose some of their efficacy with continued use making their benefit less perceptible. Combining stuff also does not lead to synergies and not even linear additions. It feels more like a partial addition, which may not necessarily result in a significant difference. And yet the occasions I felt the best were when I started several supplements together, that I knew would be quite useful, however they would still lose their efficacy nonetheless.
In the first half year I mostly took about 30 supplements per day, but in the second half I upped it to about 50, though sometimes I take even more than this if I count everything. Of course the supplement term mostly means boxed and encapsulated herbal medicines, but it also includes the morning smoothies, which usually consist of about 10 powdered stuff and the mixed herbal teas that usually consist of about 10 herbs and I mainly drink them in the afternoon and evening. Normally I put about half to one teaspoon of each powder into the smoothie. Usually I also add about 5 spices to the main meal, disregarding the taste. Initially I only took one of each supplement a day even if the recommended dose was higher due to the high number of combinations. Whenever I tested something new I was using a higher dose, so that any possible benefit would shine through. Lately though I would more likely to take recommended doses to see if it was worth buying again or a complete waste of money as it usually turns out.
Of course I ran into side-effects as well. Earlier gallbladder pain was quite common and I even suspended herbal teas for a time as that was the most likely cause. A higher dose of medicinal mushrooms also did that and I suspect liver toxicity behind this. Lowering the amount of supplements would usually solve this in a day or two, but even when the pain was stronger it would still resolve in 3-4 days without any remaining problem. I could even restart herbal teas after a while and with careful selection I had no such issues lately despite taking double the number of supplements than before. I also couldn’t see the eyes getting any yellower at any times, though this clearly indicates some toxic pressure on the liver. Interestingly my POIS symptoms are not in correlation as I would usually feel just as usual even when the pain was high and lowering the number of supplements would actually allow POIS to creep back to a heightened state. Of note the resolution pattern is similar to the chest inflammation and it also resembles in that the pain is only dull when at rest, however any kind of movement, especially when leaning forward would cause a sharp pain. Thus this may indicate some internal injury. Another problem is headache development, but only a few supplements do this (e.g. chinese skullcap, alfalfa, etc.) and I realized that lowering doses would reduce the risk of such happening and even if not a pain killer would reliably help. A more common problem is bloodshot eyes. This is quite troublesome as the same supplement may help with other symptoms though. Nevertheless a supplement with such a POIS mimetic effect is a no go for me even if it proved useful for other POISers (e.g. black cumin oil, folic acid). Some miscellaneous side effects like tinnitus often disappeared with continued use (e.g. phosphatidylserine, astaxanthin, noni), but their effectiveness also diminished at the same time. I had rather bad lower back pains, that are not part of my POIS and they were clearly caused by lion’s mane mushroom and possibly by gotu kola. Lately I also had some rather bad epigastrial cramps even when taking supplements that seemed safe before. Actually I realized that it must have been due to a higher dose of NAC, but a daily dose of 500 mg does not seem to hurt at all. Of course due to the high number of supplements I can never be sure if there is some progressive damage in the background, but currently I feel just fine if not considering POIS.
The measure/scale of treatability:The first is the most easily treated while the last is the most difficult one. I can treat 1-3 relatively well, while 4-5 only moderately and 6-7 only barely, thus objectively I would say that the POIS reduction is about 40 percent with such an intense treatment, though subjectively I would more likely to say 10 or 20 percent given how I feel most of the time. As I mentioned before when starting something new with a greater effectiveness I may get a 50-60 percent resolution, but after a day or two I would plummet back to 10-20 percentile due to developing tolerance.
1. headache
2. chest inflammation (pleural effusion?)
3. rhinitis, urinary burning
4. bloodshot eyes (conjunctival hyperemia)
5. anal burning and itching
6. muscle pain and joint crackling (myalgia and osteoarthritis)
7. depression and photophobia (encephalitis)
1. The headache was most of an issue in my earlier POIS years and less so in the past years. I think this problem mostly occurred when I had a bad POIS and also ate POIS mimetics at the same time. Figuring out some of the worst mimetics and avoiding them was an important step. Always getting enough fresh air is also a key measure. Some pain killers like Quarelin (practically Algopyrin + No-Spa) can also help a lot with this issue. Daily bowel movements to avoid systemic LPO trapping and accumulation is also crucial in this regard.
2. Reducing the frequency and intensity of the chest inflammations is one of the best result I got by treating myself. A few years ago I regularly had such painful episodes that I thought I would die. Now this hardly ever happens or even if it does the pain is usually only weak or moderate and may last only a few hours and not for days as it did before. Actually recently I had a 3 days moderate episode which was unusual as it happened in the chronic phase. My mother had a bad infection at the same time as she was coughing like crazy, thus I suspect this occurrence may have been due to that even if no other infection-like symptoms had developed in my case. Another peculiar one occurred when a hornet stung me, which is rather indicative of the underlying mechanism.
3. These problems are less bothersome and more like an inconvenience, and maybe that is the reason that even a partial treatment feels like a result. Interestingly treating rhinitis often leads to partial nasal congestion, which may be inconvenient, but at least the inflammation is reduced. Brazilian propolis and monolaurin were some of the better treatments for this issue. The burning pain of urination clearly correlates to muscle pain, as at the end of work I would always have increased muscle pain and a more intensely burning urine at the same time. Then sitting for a few hours after work would usually reduce both the muscle pain and urinary burning to a weak-moderate level. The urgency of urination must be due to the accumulation of specific LPOs. Even at a small volume of urine the irritation makes it a necessity to void or otherwise a discomforting feeling persists. Unfortunately routine lab tests are unable to show anything about this. The best treatment for this issue is corn silk tea. Unfortunately it does not do much else and the effect is temporary like for practically everything, but the impact is undeniable. I just have to wonder why is it not more popular in the prostatitis group when it has such an evident benefit. Another supplement that has a great impact on urinary issues is pterostilbene. It also reduces the burning pain to a lesser degree, but what is really peculiar that it can greatly increase the force of urination. In the past decade I got used to sitting while peeing as the stream is weak and intermittent, however when taking pterostilbene I can often do it while standing. The only downside is that when the urge comes I have to do it very soon as otherwise I would develop a really bad bladder cramping. I found that the one from Swanson was particularly effective, while I bought a cheaper one as well, which had a way reduced effect, but the cramping was also not an issue with that one.
4. Bloodshot eyes are an ever present issue. I have found quite a lot of supplements for this issue and even so this does not mean that I can actually treat it well. The problem is that they mostly provide the benefit around the peak hour which takes a lot of time to wait for and then the effect is rather temporary as well. Additionally when I am tired and the POIS force is strong the benefit becomes very transient and barely perceptible if at all. The same is true for POIS onset after an O. I can evidently ameliorate the symptom with well timed supplements, however the initiation is so powerful that it just can’t be prevented completely. Drinking coffee was like shoveling coal onto the fire in this regard and I berate myself for doing so for about 20 years. For a year I only drank filtered coffee which clearly provided a step down compared to how it had been before and even so it had a less perceptible negative effect and a more perceptible one when drinking a little more even if it was filtered. Thus a few months ago (about 5) I completely stopped drinking coffee. Of course this did not make POIS much tolerable, but at least took out another co-inducer from the equation.
A closely associated problem is dry and straining eyes. This tends to be a night issue for me that almost always starts around 9 p.m. possibly as another step on the fatigue ladder, though it may be present during the day as well. Though mostly an annoyance it can certainly prevent sleeping back during the night. Eye drops may temporarily (a few minutes) help with dry eyes and have a little stabilizing effect generally though it can’t prevent or reverse the emergence of bloodshot eyes.
I have already collected some of the supplements that were useful for bloodshot eyes in a separate post, so I won’t repeat them here.
https://poiscenter.com/forums/index.php?topic=3798.msg46077#msg46077There are also some that I have not mentioned before like Rhodiola, elderberry, rutin or high dose vitamin D, and so I will do a revision later. Unfortunately developing drug resistance is a serious issue and after a few days even combinations of them have only a little benefit, which is only enough to save me from the worst of POIS.
5. This symptom is even more stubborn than the previous one and it is at the core of my disease. The reason evidently being that it is the epicenter of the inflammation. It is interesting to see that so many people have this issue in the prostatitis group along with the burning urination and even so they don’t identify with POIS itself. I have already figured out that the burning pain is due to the excessive amount of lipid peroxides (LPO) present at the site. The difference is probably that in our case the ROS generation is more connected to the sexual activity. I also believe that due to this our disease shows a much more exaggerated fluctuation compared to baseline inflammation. The people in the prostatitis group mostly experience localized symptoms, while in our case after an O event the inflammation is so exorbitant that we develop systemic symptoms due to LPO OVERsaturation and OVERspill. The prefix of OVER really just feels a mild term to describe the actual truth behind this statement. Nevertheless the supplements that helped with this issue were mostly strong antioxidants and testosterone boosters. To name some: raw black cumin, thyme, cat’s claw, passion flower, R-lipoic acid, Q10, boron, ginger tea, white horehound tea, sage tea, dandelion root, grape seed, grapefruit seed, CBD oil, beta-sitosterol etc. Once again drug resistance is a serious issue as practically everything gets progressively less beneficial even if taken in an increased amount.
I have been on a low gluten diet for about 9 months. This means that I had stopped buying any kind of bread or buns and rolls in bakeries and instead bake them myself using gluten free flour such as rice and corn flour. I often add healthy ingredients as well. For example Goji berries are a constant addition, but I often added things like milk thistle seed, black sesame seeds, black cumin, chia seeds, linseed, inulin, turmeric, moringa, parsley and a variety of other spices, though it would often kill the yeast if I added too many things resulting in a solid spicy mass rather than any kind of bread, so I am less liberal these days. Actually in the last few weeks I gave up on this and returned to buying bread. However I only buy a kind of vitality bread made from spelt and I think it is actually better for POIS than the homemade bread I make. I suspect that the reduction of sugar is more important than the reduction of gluten.
I also cut back on milk especially after quitting coffee. I realize I can get pretty bad food comas due to it, so I plan to reduce milk consumption even more. Instead I try to eat more yogurt and kefir.
I still eat my mother’s home cooking which often contains gluten and other troublesome ingredients. Unfortunately consuming any POIS mimetics is a serious detriment and can mostly nullify any benefit provided by otherwise good supplements.
6. muscle pain and joint crackling
Muscle pain is a persistent issue. I get up with muscle pain then go to work only for it to get progressively worse. Fortunately most of the time I only do 4-6 hours of light-moderate physical activity which results in moderate muscle pain and moderately burning urine by the time I get home. However there are a fewer days when I have to work 8-10 or rarely even more hours. After such days I usually get home with a strong muscle pain and a really painful burning urine as well. The correlation between the muscle pain and the burning urine is undeniable and this is further reinforced by the fact that after sitting a few hours following work not only the muscle pain gets less intense, but at the same time the burning intensity of the urine in perfect parallel. Actually I believe this could be a major distinction from ME/CFS as I couldn’t see anyone particularly mentioning this problem on their sites. The bloodshot eyes are also in perfect “harmony” to the two previous symptoms. The more intense the work was the more brutal eye symptoms I would develop. Lasting muscle pain or fever (days) after a workout would also mess up my eyes majorly even if I was theoretically out of a POIS episode and otherwise not doing anything that particular day. My legs are more involved in the muscle pain, but the arms also hurt when lifting some weight or doing other physical activity. Sometimes just washing my teeth becomes a toil due to pain in the upper arm. Otherwise I only feel a dull pain when at rest.
The joint pain and crackling mostly involves the knees and it feels like an extension of the muscle pain. The worse muscle pain was the more issues I would have with the knees. Fortunately during work I don’t really notice the knee problems and I can mostly overcome the leg pain with willpower. However the knee problem is very apparent when I sit down to rest at home and when I try to stand up I am immediately faced with this unpleasant pain and crackling. After a longer work day the feet also tends to crackle a lot. On the rare occasion the muscle pain improved there was a clear reduction in knee pain as well and it felt much more flexible. While joint support supplements are clearly beneficial, they can’t really do anything as long as I can’t somehow solve the muscle pain problem. A lot of sleeping can usually help with muscle pain, though there are times when I wake up with more pain than I went to bed with. This maybe due to the hindered excretion of LPOs as I can’t urinate while sleeping unless I wake up due to the urge, but this itself indicates that the problem is quite bad by that time. This problem is also elevated by some POIS mimetics I ate the day before and of course it is very evident at POIS onset as well. I may have a really smooth, relaxed feeling in the muscles on the day of an O, but either several hours later or as more often happens when getting out of the bed in the morning I am suddenly faced with an increased, mostly moderate degree of pain. Of course starting work in such a condition is a really bad omen for the afternoon.
There were only a few supplements that provided a very noticeable improvement in this regard and even so they only worked like an hour and then drug tolerance or tachyphylaxis happened. The following are a few examples: rutin, oregano oil essence, ganoderma, niacin, saffron, lungwort tea, ecdysterone, possibly indole-3-carbinol
7. depression and photophobia
These two are practically the most stubborn ones. I am rather sure that both are a sign of an ongoing encephalitis. While photophobia somewhat correlates with bloodshot eyes, it has to be noted that the correlation between depression and photophobia is even stronger. On the rare chance I manage to improve depression photophobia also tends to improve. Both of these are the worst in the morning and their intensity tends to determine my whole day afterwards. While depression is not the only cognitive symptom, its extent clearly determines the others. The more depressed I am the more my thought process falters. At times I feel like I completely stopped thinking or at least my thoughts get very basic, monotonic and uncreative. I can’t recall memories or words in the fuzzy jumble. When paired with PEM after a harder work day the brain fog is mixed with a nauseating vertigo, which makes me unable to do any focused or coherent activity and all my free time is thrown to the trash.
I don’t believe the brain to be the primary site for the inflammation. It is more likely that LPOs constantly pass through the BBB and cause an extended, secondary inflammation.
Antidepressants: some exercises can help that do not lead to muscle fever, saffron, lavender, ecdysterone, damiana, guggul, L-dopa, longjack, drotaverine, licorice, burdock, guduchi, elderberry, vinpocetine, niacin, Mg-citrate, phosphatidylserine, fennel, holy basil, lycopene and maybe some others to a lesser extent. Once again after one or two occasions these also loose their edge and hardly work afterwards, thus I can’t get any constant benefits, not to mention the narrow interval of the peak benefit.
Photophobia: aspirin, resveratrol, the previous anti-depressants, but nothing works consistently.
8. secret symptom
No matter how good I have ever felt, this symptom always remained. It was clearly reduced when all other symptoms were reduced as well, however it had never ceded completely and it always remained to torture me emotionally and remind me of the futility of my battle. I could write a book about what this symptom entails, but revealing it would be a psychological disaster. I also can’t believe that no one else had realized this, but maybe I am just crazier than the rest of the world.
Miscellaneous:- sleep issues: Though sleeping issues are not a major part of my POIS, if anyone has such problems should definitely try myricetin. This proved to be far better than any other sleep aids, such as melatonin, valeriana or any kind of sleep aid complexes. Myricetin makes it possible to sleep through most nights without waking up in the middle and then not being able to sleep back. An otherwise healthy friend of mine also had irresolvable sleeping issues, though she had tried many things. Nevertheless she also praised myricetin after trying it, thus this effect is not POIS specific.
I also realized that most of my sleeping issues originate from dry eyes that can disturb relaxation and thus sleeping. Interestingly the dry eye problem appears to be a night issue for me as it usually begins to become really bad around 9 p.m., when I am also beginning to get tired. Unfortunately washing only provides a temporary relief as in a few minutes they would be dry again. Recently I have begun experimenting with eye drops and they also help only temporary, but still slightly better than simply washing the eyes, so I see at least some worth in them.
- dopamine agonists: Generally I had a positive experience with dopamine agonists, though they could not achieve a major breakthrough. At least I could not experience any particular detrimental effects either. Unfortunately both catuaba and phenylalanine lost its initially evident anti-depressive effect, and yet I have been taking them regularly. I haven’t yet tried higher doses though. L-dopa proved to be fairly reliable anti-depressant especially when I took it with a bunch other stuff. I bought a new L-tyrozine supplement, but I could not perceive an anti-depressive effect while on it. I have just begun to take bupropion in the last few days, but so far I couldn’t see it making any difference.
- PDE4 inhibitors: I tried to combine different PDE4 inhibitors to see the outcome. I tested a combo of Tongkat ali, drotaverine and Forskolin and they certainly provided a nice relief, though far from complete. Unfortunately again drug tolerance once again dulled the overall effect. By the way the individual anti-depressive effect was greatest for tongkat ali, then drotaverine, while the cAMP booster forskolin only had a mild anti-depressive effect.
- NO boosters: One of my best experience was with NO boosters. They can really nicely increase sexual performance, especially when combined with testosterone boosters. This makes it possible to last a lot longer while edging and provides exceptional control, which makes it easier to abort masturbation when it would come to the culmination. This allowed me to confirm the observation that POIS is indeed caused by the release of the seminal fluid and not due to the physical aspects of sexual activity. I can claim this with great certainty as there were numerous occasions when I did lengthy edgings with NO boosters. I would often go for about an hour without seeing any emerging problems, but some precum would come out sooner or later and exactly then my eyes would get bloodshot right away. I would also get partial symptoms as well like an increased muscle pain the next day. Of course if I later had a full ejaculation the symptoms would manifest to their full extent. This also makes me believe that dry or retrograde ejaculations could also help in my case even if I have not managed to achieve anything like that so far. I also suspect that due to the two layered nature of my POIS, this would only help the autoimmunity part and acute POIS and not with the chronic level of symptoms that are maintained by senescence (SASP).
NO boosters: catuaba, thiamine nitrate, kola nut, guarana, asafoetida, muira puama, ginger.
- bitter stuff: Generally I had some positive experience with bitter stuff (e.g. artichoke, andrographis, neem, etc). However I often find it difficult to consume them, especially in a daily manner. If I mix them in a smoothie, it makes the whole thing hardly consumable. Andrographis was especially bad, as I simply couldn’t swallow it without making grimaces and the help it provided was moderate at best, so I am not altogether sure if it is worth the hassle. Besides andrographis the other stuff that I found to be just as impossible to consume was oregano essential oil. Even one drop is so strong that it is crazy. It is rather unfortunate that this was practically the only form that was actually useful.
- amalgam fillings: At the start of the year I had all three of my amalgam tooth fillings replaced. So far this did not cause any change. It is true though that I got them in my early POIS years around the time I noticed the one week periods. I believe I had POIS by then, but it may be possible that the amalgam fillings contributed to its worsening.
- cleanliness: Showering or bathing after an O does not stop POIS, but certainly helps to blunt it a little. In my case the temperature of the water does not seem to alter much. Nowadays I shower practically every day. In the past there were times when I had gone without for 2 or 3 days. At 3 days I have often noticed that my POIS (e.g. bloodshot eyes and depression) was much worse and taking a bath would make me feel much better. Despite all of this showering often makes my eyes more bloodshot, especially in the evenings. What is really bad though when I do it after a long day of work when PEM is high. In such cases my eyes are very labile and even pure water can turn it very bloodshot, extremely tired and painful that usually needs a full sleep before they recover to a usual state.
- latex: On some occasions I used a condom to masturbate and it definitely helped increasing the time I spent with edging as it reduced the sensation of the stimulation. I could also not experience any problem with the latex itself. Symptoms only appeared after precum or ejaculation as usual and no local reaction at all. Thus while POIS is an atopic condition, it does not necessarily imply allergy to everything.
For me the two leading theories about the cause of POIS are autoimmunity and senescence. At first I couldn’t decide, which is the more likely one, but after thinking about it at length I realized that both must be true. It must have begun with autoimmunity in the beginning when the POIS cycles were more evident and I had clear resolutions after the one week periods. However at some point in time the symptoms became chronic and ever lasting, which must be caused by SASP. I can only speculate when this may have happened, but one possibility is that this transformation was partly behind the increase of POIS strength at the age of 17 about two decades ago. Nowadays it is a 2 layered disease that involves the same inflammatory pathway, which is also the reason it feels the same and is affected by the same factors and medications. The most likely cause of autoimmunity is erroneous viral pattern recognition that misidentifies seminal dsRNA as viral particles, thus initiating the body’s inflammatory defense mechanism. At the same time exhausted senescent cells also pump out a lot of ROS, leading to robust lipid peroxidation. The pure abundance of LPOs and their metabolic products cause a state of sepsis, which manifest as POIS symptoms. By nature this inflammatory mechanism is normally protective, thus the body has a great tolerance against it and this must be the only reason that POIS is not outright lethal and just makes us very ill.
At this point I am not even sure if a cure is possible at all. I suspect I would need to prohibit the inflammation in a sustained manner if I hoped for one. So far I could not achieve that and a partial treatment only seems to dull the symptoms, but the inflammation lingers on. I would need to abstain more if I wanted to go towards this goal, but I tend to fail in this. The most I did last year were 3 and 4 weeks, however even at 4 weeks I felt generally unwell. At least I feel a step down after a week, but the difference isn’t that big.
Finding a sufficient treatment may take years, but I am rather dismayed that a last chance to have a family is slipping away right now. Nevertheless there is no other choice than the patient one, even if life passes by.
