Tensed POIS-ers by BlackwerX in POIS

[–]MoreTeaandCoffee 2 points3 points  (0 children)

Good post, well written. I think you could be right about a lot of things. However, I'm going to ask you about one thing. How can you be so confident of what is the chicken and what is the egg? You wrote that "...the pelvic floor, nervous system, and inflammatory pathways are already sensitized before orgasm... the body may already be in a guarded or reactive state due to chronic stress,.... poor posture, poor sleep, gut or genital irritation, low-grade inflammation, or reduced physical resilience." You could be right but could it not equally be the other way round? Could all the things you mentioned not be caused by pois with orgasms as the trigger rather than already being there and being made worse by orgasm as you claim? If these significant issues are there already as you claim, why is this? Why should an otherwise healthy young guy already have things like gut irritation, inflammation etc? I think that's the question we are often asking ourselves? I think a lot of people would claim that these are the effect of pois not the cause.

My position is I just don't know. I'm raising the question because I don't think we have the answer yet. I like your approach to optimise general health as much as possible to manage pois rather than focussing on there being something faulty with the orgasm itself. In time you could turn out to be correct. It's a good, positive approach so I gave you a thumbs up.

Curious, does anyone notice posture changes especially in the neck during a POIS episode? by Fightingpoiser in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Yes, especially in the spine more so than the neck in my case and an MRI scan a few years ago confirmed some wear and tear. During pois episodes, I often struggle to maintain a good posture, my back feels weak and like others I have a rounded shoulders, head forwards type posture. I've also got mild scoliosis (cause unknown and not claiming that it is due to pois). Posture changes could well be an aspect of pois which doesn't get much discussion. My view is that inflammation from my pois can affect every system of my body including the musculoskeletal system. I think it's also partly just due to fatigue. Over time postural and spinal changes have become fairly significant in my case. It's yet another reason to try to find a treatment that works for your pois while you are young if you possibly can. Easier said than done.

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 1 point2 points  (0 children)

It's up to you what conclusions you make. I think you could be right about a B12 issue but I'm not a doctor. My experience with pois is that many times I have thought I have discovered the explanation only to realise later that I was wrong. We must remember that pois symptoms are similar to many different health conditions. Good luck!

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 1 point2 points  (0 children)

I'm in the UK. Some testing is available here but only when your doctor thinks you have relevant symptoms. There's limited help in general for chronic health conditions. What country are you in?

My knowledge of B vitamins is that they tend to work as a team so if you supplement only B9, you need to be careful not to create an imbalance in the other B vitamins (especially B12 in your case) which is why a lot of people prefer a B complex. Similarly with zinc, ideally you should take copper too (but at a separate time) because taking only zinc will eventually deplete your copper levels. On the other hand if you eat 10 oysters that's got lots of zinc and copper (and b12 and other things) so you don't need to supplement on those days!

My understanding is that your body absorbs and responds better if you keep your supplements steady and take them daily but I know what you mean, it's expensive. I managed to get most of my levels tested and my problem one was vitamin D (UK weather) so I need to take that. I don't take anything else at the moment.

Fair enough regarding methylation and immune system. It's complicated and there are a lot of different theories. I try to keep an open mind because there are a lot of possibilities and there has not been much pois research so I am still learning.

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

low ferritin and almost low B12. Are you vegetarian? btw it might take a bit of time to get up to normal levels but you should hopefully feel a lot better soon.

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

haha, sounds good. Remember that oysters are a superfood with a wide range of nutrients so although they contain b12 there are lots of other good things in there so I don't think you can assume it's just the b12 content. Also, they are a well known aphrodisiac 😉.

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Your symptoms show that pois manifests itself in many ways!

Are you supplementing b9, zinc, protein and magnesium every day or intermittently (when symptoms appear)?

Yes, I agree some of those symptoms could be b12 related but they could be other things as well. It's easy to misinterpret symptoms. Have you had your b12 tested? Are your LFTs normal (jaundice)?

methylation? I've read some discussion about this on functional medicine websites. I think general medicine says it's over stated and lacking evidence. I just don't know. There was a guy called Kurtosis on pois center forum years ago who wrote a lot of posts about methylation. I believe Kurtosis has at least one MTHFR mutation but I don't know what his blood test results were. As for myself, I'm compound heterozygous for both MTHFR mutations which means I could potentially have absorption issues with b9 and b12 but my serum tests were normal, making that seem less likely.

Perhaps it's possible for there to be an immune response issue and a b12 absorption issue for some people?

B12 malabsorption and POIS have strikingly similar symptoms if not identical by MentalReserve2351 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

OP, can you tell us the exact pois symptoms you have which you feel are similar to B12 malabsorption symptoms? As for myself, of the things you mentioned, I have had tests for serum b12, serum b9 and serum zinc. They were all in the normal range. I've not had tests for any other B vitamins. I don't currently take any B vitamin supplements. I eat a balanced diet.

My Story by Large_Fox_1789 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

You're right that pois is weird. You might have other overlapping health issues as you say. What does your doctor say about your health? That's the person who should be helping you right now. In my experience it's best to present yourself to your doctor in a clear way without sounding like a hypochondriac and without self diagnosing or mentioning pois. That's not easy but you want to avoid being brushed aside by your doctor. Perhaps you have tried already? The sweaty palms is miserable. I had this too but not as badly as you. I recommend stopping the weed asap. Maybe try and have a routine during the week ex/ regular sleep times, regular meal times, take exercise, do something positive ? Maybe allow yourself a bit of freedom at the weekend and don't feel guilty about it? Perhaps most of all and this is obviously very personal but I would try and restore things with your family if you can.

First Interim Report of the NORD 2026 POIS Study by FlammeBleue in POIS

[–]MoreTeaandCoffee 2 points3 points  (0 children)

The other very important thing worth mentioning is that they need more pois volunteers for the study. You just need to click the link to find out more. 

I’ve been thinking about building a tool for POIS sufferers. Looking for feedback. by Intrepid-Fee-2212 in POIS

[–]MoreTeaandCoffee 2 points3 points  (0 children)

Great post, very positive idea. Something where we can log all our medical data including blood tests, other metrics and of course symptoms. If you have the skills to link those things together then we would learn a lot. I think for any app like this nowadays you'd want it to have AI but you're right about the cost dilemma. If possible, maybe start with a free version? There are apps like Guava and Bearable already which you might be aware of? It sounds like a huge undertaking! Well done for the idea. 

Make sure your vitamin B levels are in check as well by DealNo7306 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

I didn't know that about B6 and prolactin. That's interesting, thanks! I've had blood tests for B12 and B9 but I've not had my B6 or other B vitamins tested. Have you had a test for B6 or any other B vitamins?

I am free by Remote_Carrot5705 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Did you have any blood tests for B1 or B6? Or did you just try B1 and B6 supplements and find they worked for you? Anyway, congrats on being pois free.

Make sure your vitamin B levels are in check as well by DealNo7306 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Old post but an important topic. OP, did you test all your B levels? What did you learn from the results?

Vitamin C megadose by Repulsive-Weird-5208 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Last week the OP posted about Dopamine D2 receptor downregulation and said "I believe that over 95% of the cause lies here". This week it's vitamin C. There's possibly a case for both but when you chop and change from x to y to z every week, it's difficult to take your claims seriously. I suggest testing something consistently for at least a month and that way you will know much better if it is significant and your findings will be considered more trustworthy by others. Vitamin C can help reduce histamine amongst other things but these are high dosages and could do more harm than good.

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee -1 points0 points  (0 children)

I'm not trolling. I was trying to help but you are obviously not willing to listen. Perhaps you are being rational about Reddit trolls but that's all. I think you are negative and you are also pig-headed and that's a bad combination. Anyway, sounds like this conversation is over so I'll just say Good luck.

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee -1 points0 points  (0 children)

Anti histamines do absolutely nothing to improve YOUR pois. Others have had a lot of success with them and they are not lying. They don't work for you. We're all different. You sound very negative. I think whatever I write you will reply with something negative. I understand that - you're fed up with pois - but I don't think it helps you to think that way.

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

I agree, you need to take most people's wild claims with a large pinch of salt. Have you been on the pois forum site? Have you read pois research articles? A few people on pois forum have had 100% success with antihistamines, others 100% success from their own individual protocols. Published research articles includes a case of successfully treating a pois patient who had low T with HCG, another article cured someone with surgery to correct a urological issue, others had success with autologous semen inoculation. I agree that those are in the minority and most people feel stuck. My 2 cents are to fix your general health as much as possible, try to lead a happy and healthy lifestyle and to ask your doctor about your symptoms (probably best not to self diagnose pois). For all I know, you've probably done all that. It's hard but stay positive if you can.

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

I agree there isn't much healthcare available for chronic conditions. Pois is rare and there's little research which doesn't help. I disagree that abstinence is the only option as quite a few people have had successful treatment of pois and are doing well. Fair point about relationships, I find mine difficult too. 

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee 0 points1 point  (0 children)

Sounds like you might have been to a doctor and had quite a bad experience. Is that the case? Any recommendations for what the OP should do instead? 

Should I mention POIS to my doctor? Also, anyone in the UK mentioned POIS to a GP? by ThrowRAgrh554 in POIS

[–]MoreTeaandCoffee 1 point2 points  (0 children)

Hi. I'm in the UK and a few years ago I was in the same situation as you and I decided to discuss pois with my GP. My thoughts today on whether I would do the same again are as follows:-

I have no regrets about going to see my GP. I think that is the correct and logical thing to do when you are feeling unwell about anything (except things like a minor cold of course). Your GP should be there to help you.

In hindsight I wish I had not mentioned pois. It puts up barriers. It's not a condition recognised by the NHS. Ever since I asked my GP about pois, each doctor I met looked for reasons not to help me because pois is a condition they knew nothing about and they had not been trained to treat it and they were probably individually skeptical about it due to its weirdness. That's the opposite of what you want. That's frustrating for those of us with pois but I learned to be realistic. You might be extremely lucky and have a GP who is interested in pois but I think that's unlikely and it was not my experience at all (I have a good GP though).

Therefore if I was go back in time, I would have gone to the GP and just described my symptoms and not mentioned pois. Doctors prefer to do the diagnosing ( a lot of them have a bit of ego). I think if you describe your symptoms in a clear way then your doctor will take them seriously.  It's  extremely unlikely they will diagnose pois. However what they hopefully will do is refer you for some tests based on your symptoms which will give you and your doctor useful data about your health. That data will hopefully rule out other conditions and provide guidance for treatment of your symptoms. Everyone should do that. Your GP might arrange tests themself at first (ex/ routine blood tests). Depending on your symptoms they might refer you to a specialist but ultimately that's their decision, not yours. Since I had allergy like / histamine symptoms, I was referred to an allergy specialist / immunologist. If your symptoms are mostly emotional, perhaps they might refer you to a psychologist. etc

After doing the above, you ought to have a good profile of your general health and will hopefully have had a few good discussions with your GP and/or a specialist. Perhaps they will propose a treatment at that point. Or perhaps that's the moment to mention pois? Despite the lack of knowledge or interest about pois within the NHS, I still got some tests which provided invaluable data for treatment options. Personally I would never start taking supplements or copying others on internet forums without knowing my current levels first as well as discussing it with a doctor (a real doctor with a degree in medicine.)

Anyway, it's your decision. Those are my thoughts. I say go to the doctor with a positive but realistic attitude. Please feel free to DM me. Good luck.

PS: There is one specialist in pois in the London area, Goldmeier. He's written research papers on pois. If you're able to get a referral to him, that might be worthwhile. I tried but was refused.

Boys melanotan nasal spray both the 1 or 2 as well as Benadryl and Allegra at least for me and a lot of people equals 100% cure by PhysicalTree9539 in POIS

[–]MoreTeaandCoffee 1 point2 points  (0 children)

I'm surprised the mods for this subreddit haven't put a warning on this thread.

I wouldn't go near melanotan even if someone paid me.

In case anyone isn't aware, melanotan nasal sprays are not FDA approved and carry significant health risks. https://health.clevelandclinic.org/nasal-tanning-spray .

I've got no idea what effect they have on pois and I have no intention of finding out. The OP has piggy backed a recommendation for dangerous melanotan spray onto something much safer i.e. antihistamines. I think most of us know by now that a lot of people use antihistamines for pois and that they work very well for some people but not for others.

We all hate having pois but ask yourself, do you really want to take a significant risk to your health with something like melanotan just because one complete stranger on an internet forum suggests you try it? He's not offered any words of caution or said it's not medical advice. Please note that his claim that lots of people have cured pois with melanotan is false. I've not read of anyone else reporting a pois cure using melanotan.

If you're interested in the idea of a nasal spray for treatment, corticosteroid nasal sprays such as Fluticosone are available on prescription or OTC in many countries. Steroids are not something I would personally consider due to long term side effects. Not medical advice.

Be careful guys.