[gpg]

gpg - thanks for that interesting post.
Q - Did having an orgasm make any difference for you, having PCC (I would have thought it would have)?
Q - Were you underweight and had great difficulty putting on weight?
Q - Did you have headaches most days of the week?
Q - Were you up and down between 'wired & anxious' and 'exhausted & brain foggy'?

I have never had high BP. In fact I was on the low side for many years and normal blood glucose levels, and lack of sweating as opposed to excessive sweating, but ticked the other symptoms. cheers

hi acronym and lapoisse2
I will start by answering acronyms questions. (PCC is pheochromocytoma adrenal gland tumour).
A - Yes your thought is correct - I assumed the question of my orgasm would be first. Firstly, my orgasm is a phenomenally heightened experience - I am presuming much more so than normal. Obviously, I did not realise this until very recently - I presumed everyone felt like they got hit with a sledgehammer. A powerful initial sensation but not being put physically/mentally out of action for an extended period of time like you guys - because my health is like that all the time, even before the orgasm.
I would think that a small amount of adrenaline release during orgasm is normal but not a large, excessive, release, which is what I think is happening, in isolation, in PIOS - rather than the continuous excess of PCC.
However, as you all describe, there is no choice about whether to have a regular orgasm or not because the sensation of continually craving an orgasm is unbearable. This is why I am locked into this cycle too. I think this whole scenario has something to do with adrenaline de-sensitisation of the cell receptors due to the regularly occurring excess adrenaline. Our cells crave the adrenaline due to their adrenaline de-sensitisation but that additional release from orgasm just makes everything else worse afterwards - or in my case, the same as always. De-sensitisation of cell adrenaline receptors is a proven phenomenon in PCC.
A - Yes - I am underweight for my height because I do have difficulty putting on weight. Apparently, this is due to the adrenaline speeding up the metabolism and burning off food intake too quickly. I have to eat four high calorie meals per day just to remain underweight and that is without doing any exertion or exercise.
A - Yes - I have had a continuous low level headache since before I can remember but I am only understanding this now. Then, in the past year, I have started having regular adrenal crisis where headache pain is unbearable and  horrific. This lasts for around 2 hours and my blood pressure goes up to 150 with hot sweating flushes.
A - That last question describes my brain scenario exactly. Years ago, I once said to the doctor that my brain is either "racing" with unstoppable thoughts or completely "dead" to all thought - there was no normal balance. I really believed that this would give the doctor some obvious clue to what disease I had. But, of course, when you say something like this, you come across as a manic-depressive or having a somatic disorder ie, either way just crazy. I think the racing thought is the effect of the initial excess adrenaline release and the dead brain is the adrenaline hogging the cell receptors for an extended time, in place of other brain chemicals needed for normal brain function.

I was also told that I had low BP for years. But BP is always taken at rest sitting down - never after rising to a standing position - where raised BP against lying horizontal is the tell-tale sign.
Also, when was your BP taken in relation to the timing of your orgasm - BP may only be higher in the hours and days following orgasm?

This brings me to Lalpoisse2 comments that he has had 24 hour urine testing for catecholamines (adrenalines).  Was this done by an endocrinologist or your family doctor request? Was this done in the 24 hours after orgasm? This urine test is based on PCC where urine levels are usually high on any day. And, PIOS is not PCC. It will have its own pathology. No one currently knows the best way or time to detect the adrenaline release in PIOS. Even in PPC, it can take a dogged endocrinologist to persevere and get the testing right, especially if tests are initially coming back negative for various reasons. And, if you do not already have demonstrated tumours on imaging, most doctors will accept those false negative results because it is difficult to justify continued testing on a hunch, particularly when you are saying that you have PIOS.

Sweating is another interesting one because inappropriate sweating is one of the so-called diagnostic triad of PCC signs during an adrenal crisis - the others being unbearable headache (requiring morphine) and high BP. Yet sweating is the most variable sign among PCC patients.
Before a year ago, I also did very little sweating but now I get random bouts of hot flushes and sweating for no reason (inappropriately). However, I have always sweated inappropriately during very minor bouts of physical exertion - which also comes with feeling very unwell. So, you need to think about when and how you start to sweat. It is more like an inappropriate pattern of sweating behaviour, I think. Its not about normal appropriate sweating but the sign of your body sweating due to excess adrenaline - so for PCC patients that means during minor exertion, or an adrenal crisis, or during hot weather (which PCC patients avoid).

Thank you for the interesting questions - I hope I have answered them relevantly.

regards
gpg

[gondal4]

do any of u have difficulty/pain having hot tea,cofee,hot soup etc after orgasm? i have developed this problem too

[gondal4]

And yes i have normally high bp 160 and above since childhood and bad sweat and  mental problems like racing thoughts and dull brain from last 2 years

[gpg]

And yes i have normally high bp 160 and above since childhood and bad sweat and  mental problems like racing thoughts and dull brain from last 2 years

hi gondal
In your case, being ill since childhood, you must get a CT or MRI scan of your adrenal glands to check for pheochromocytoma (PCC). There are specific adrenal gland scan protocols which find them.
I dont know where you live but I would pay for one if you can afford it - like I did - rather than trying to convince your health system to pay for one - its a lot less stressful.
If the scans find tumours in your adrenal glands then you will then get the blood/urine and heart testing that you need because you are PCC symptomatic.
Good luck - let us know.
gpg

[demografx]

[Former Moderator visiting periodically]

I am starting TRT .
Dosage- 250mg Sustanone once a week. anastrazole 1mg daily,and  tablet Finasteride 1 mg daily.

Any expert advice or suggestion guys ?

Periodic ingestion of testosterone did NOT work for me.

In my case I started with injectable testosterone: it didn't work (for me)

According to my endocrinologist, DAILY testosterone patches -- or testosterone gel -- are the way to go for me. Why? His expert opinion is that daily patches or gel best mimic the natural way that testosterone courses through our body. Periodics -- such as injectables -- run counter to the natural method in that they "spike" in and out of our systems, summarizing for you what my endo said to me.

[MrVat7]

[Former Moderator visiting periodically]

I am starting TRT .
Dosage- 250mg Sustanone once a week. anastrazole 1mg daily,and  tablet Finasteride 1 mg daily.

Any expert advice or suggestion guys ?

Periodic ingestion of testosterone did NOT work for me.

In my case I started with injectable testosterone: it didn't work (for me)

According to my endocrinologist, DAILY testosterone patches -- or testosterone gel -- are the way to go for me. Why? His expert opinion is that daily patches or gel best mimic the natural way that testosterone courses through our body. Periodics -- such as injectables -- run counter to the natural method in that they "spike" in and out of our systems, summarizing for you what my endo said to me.

Yes but taking testosterone patches or Tgels increase the chance of side effect such as gynecomastia.. as more of aromatase enzyme are located near muscle and fat cells .. my andrologist said that sustanone 250 has long half life esters.. and it should be injected deep inside.. so less chances of having side effects.. and i dont know why injectables didnt worked for you .. what dosage were you taking ? and which ester ?

[Jonas STHLM]

I have tried testosterone patches for over 4 years-no difference.

I have tried a diary and gluten free diet for a very long time also-no difference.

[Jonas STHLM]

I like to come in contact with other poisers in Sweden so the rest of my message will be in Swedish.

Hej allihopa, jag har varit i kontakt med Stefan Arver som är docent och överläkare på karolinska sjukhuset och specialiserad på andrologi och sexualmedicin. Han kommer att ta kontakt med Waldinger, men även de forskarna på Rutgers universitet som skall genomföra forskningen på vårat problem. Han är intresserad av att hitta en lösning och jag tror att det kan vara en bra ide att höra av sig till honom, ju mer vi är desto större är chansen att vi får hjälp även på hemmaplan. Kontakta mig för hans mejladress.

Tack för hjälpen,

Jonas

[gpg]

hi guys
The adrenal glands also secrete the sex hormones. Although the adrenal glands are not the primary site of sex hormone secretion, if there is a problem with the adrenal glands and periodic excess adrenaline secretion, then this will mess with your sex hormones.
In this situation, the sex hormones are a symptom of POIS, not the cause. Treating sex hormone symptoms may or may not lead to improvement of POIS. The central issue of excess adrenaline release is not being addressed.
Although the initial hit of excess adrenaline release occurs just after orgasm and is rapidly cleared from the bloodstream, it is the extended length of time that adrenaline remains docked in the cell receptors of just about every cell in the body that would explain the "post" in POIS. The functioning of those cells is disrupted and messes up all the normal hormone levels.
This appears to be the reason that sustained-release testosterone patches are the most effective because the
release needs to be continuous to ameliorate the sustained effects of the initial excess adrenaline release.
regards
gpg

[Scarysheep]

Hello, everybody. I found this forum a few months ago, but have only now decided to post.

I figure I better introduce myself first:
    My symptoms include: Fatigue, sleepiness- even with over 12 hours of sleep, joint/muscle pain, general discomfort, dry lips/hands, irritability, loss of social skills, loss of concentration and ability to recall a passage after I've read it, shakiness, sticky/sandy feeling eyes, shallow breathing and constant feeling of coldness.
    My symptoms start immediately after orgasm and grow in intensity over days one and two, and remain constant through day five. On day 6, they taper off throughout the day and by nighttime on day 6, I feel wonderful. It takes about 12 days to recover entirely.
    I am 17 years old and have had these symptoms as long as I can remember and they are absolutely debilitating. I've had several blood tests done, none of which yielded meaningful results except a high-ish prolactin level, which I've been taking wellbutin for 3 days now with no relief of symptoms yet, though from what I've read hear, I'm not optimistic. I take 250 mg flush Niacin daily before bed, which takes the edge off the shakiness and weird eye feeling, but at the cost of drymouth. The unpredictability of nocturnal emissions is the bane of my existence and has equal effect as intentional orgasm (which I've pretty much given up entirely).
    Things I've noticed: When I take niacin while feeling pois, the flush does not cover entirely like normal, its patchy, as if the blood flow is not as it normal is. I've been experimenting with gluten-free for the last 3 days; no conclusive results yet, but I almost feel an improvement already. I'll continue experimenting with this for a few more days or weeks, depending on improvement. My sitting blood pressure is normal, but (at least at the doctor's office), my standing blood pressure was high.
    Interesting note: I measure my pois days by how well I can play my trombone. The bad days, I can barely play well, but on good days, I'm amazing- like got one of the top scholarship spots for my state's best music school good. I want to be able to pursue a career in music, but this condition is so bad it may end up ruining me.

That's pretty much all I've got. Please feel free to ask me questions or for specifics and I'll try to get back to you! I truly believe we can get to the bottom of this medical mystery. If there's anything you recommend I try please to not hesitate to suggest it.

hi guys
...etc.
gpg

Also, Mr. gpg, how would you recommend I start looking into your adrenaline based solution, since I have some blood pressure issues and you seem to have a good lead here?

[gpg]

hi ScarySheep
Once again, you have had these problems since childhood, and you are only 17, so you definitely need to get an MRI scan of you abdomen, looking for adrenal gland tumours. It is essential that you rule this out (or in), including other vital organ issues which could be picked up, otherwise you could waste many years of your life without knowing for sure.
Getting a single area (abdomen)  MRI scan privately is pretty straight-forward and not too expensive - plus many places do not ask for a doctors referral - you can self refer. A CT scan is more difficult because it uses x-ray radiation and most private imaging companies will request a doctors referral to justify this. Also, you need a special type of CT scan but only a standard MRI to pick up any tumours. So, if you are self referring, an MRI is the best way to go.
Once again, your blood pressure is increasing when you stand up (orthostatic hypertension), and that is a red flag for the existence of adrenal gland dysfunction and/or PCC tumour.
Ask your doctor how he is going to investigate your orthostatic hypertension. Your doctor found this himself so he can not dismiss it.
Tell him that you would like an MRI scan of your adrenal glands either through him - if refused go privately. Have the scan done immediately - no matter what other action is taken.
Tell him that you are experiencing symptoms consistent with excess adrenaline release and that you would like to be referred to an endocrinologist.
The reason that you are able to feel much better periodically is because the adrenaline is finally letting go of the cell receptors that it is hogging on every cell in your body. Once those receptors are cleared then you feel "normal" again.
Let us know.
good luck
gpg

[fornicationDENIED2]

I have increased the frequency of ejaculation and noticed the war is not over. I am still having hyperprolactemia (caused by the prednisone induced cushing's syndrome) is still causing issues, I was initially denied treatment despite having the prolactin levels of a woman because I was still inside the stupid range because apparently doctors are either too dumb to realize that despite being inside the range a real man should NOT have prolactin that high, or avoiding a possible lawsuit at my expense by denying treatment. I now have to make the decision to masturbate before my next prolactin test, or be honest and live with this curse till I die because of absurd antiquated protocols, not a hard choice to make if health and fornication is on the line. Keep in mind I have tried everything else in my reach to try to reduce prolactin without dopamine agonists yet failed miserably. I was hoping to avoid those dopamine agonists drugs because of their side effects but it seems I have no other choice.

If you have a 24 to 48 hours or more refractory period if you cant have an erection despite being young and healthy I advice getting prolactin levels checked.

[Thapelo]

Do Poisers feel symptoms in summer ?

I do not MrVat7, at least it is significantly less than in the winter.
Especially feeling depressed/down is reduced in the summer compared with the winter

[Vincent M]

poiscenter.com seems to be down. When I try to access it I just get this message:

"Notice: This domain name expired on 05/09/14 and is pending renewal or deletion".

Anyone else getting this also? This is very worrying to me.

[johanstefansson]

having had tinnitus for quite some time, 17 years, I today read about levels of adrenalin, how tinnitus increases levels of adrenalin.

also said sex creates spikes in adrenalin.

your thoughts about this?

[Vincent M]

Nevermind. Seems to be back up now. Odd.

[gpg]

hi Scott

This is a reply to your private email to me which I have no way to reply to. The reply is quite general so I hope it might be of interest to other POIS patients.

Thank you for your comments on my posts.

First of all, I am not saying that you guys or girls ALL have a pheochromocytoma (PCC) in your adrenal glands - I am just pointing out a major overlap of adrenaline related symptoms between PCC and POIS.

Maybe all of the small percentage of women with POIS do actually have a PCC and POIS is actually a totally male disorder?

I think that POIS is an adrenal gland disorder - but what type? Male hormones are part of it but
maybe not female hormones, making it a male disorder?

I think that an MRI of the adrenal glands is the best place to start - firstly to rule out/in
PCC and secondly to check for any kind of tissue mass in the adrenal glands which
should not be there.

These non-PCC adrenal masses are usually labelled as incidentalomas by the docs but if you
have POIS then these anomolous tissue masses could be anything but incidental.

I would not be surprised if all POIS patients have some kind of pathological tissue mass in their
adrenal glands - either PCC or something functionally similar.

If any type of mass is found in the adrenal glands then you have a physical focus for your adrenaline
symptoms and hopefully adrenal functioning testing will elucidate what is going on for you and
others.

You really should buy yourself an automatic blood pressure/heart rate monitor for your wrist.
This needs daily recording over extended time - particularly before and after orgasm (see my previous posts).

Keeping this record yourself will provide a lot of information on your pathology and a doctor is not going
to do this for you.

I dont really know the long term outcome of PCC but I think it just gets so bad that everyone
eventually gets diagnosed and treated.

I think seasonal POIS is evidence of adrenal gland hormone issues and chronobiology.

So, have an MRI scan privately - easily and cheaply done in Europe - but I think they can be expensive in the USA? Get a BP monitor - easily and cheaply bought. Collect MRI, BP and heart rate (rhythm) data and set against your symptoms.

regards
gpg

[A-Memo]

i have a question why does persons with POIS get those frustrating and strange facial expression with extreme facial exhaustion actually i would say the most ebrassing thing abouth the POIS is the facial changes that happen after orgasm and then you look like a person who havnt sleep for 4 days it mimmc extreme exhaustion while you are not exhausted ,, can any medication relieve this i dont htink vitamins and ssri can do so ?
any idea , infact i dont care about the fog as i care abouth the appeareance :S :S []
aadd to that i would like to say that i have severe gluten sensitivity to extent i cant sleep well for a day after ingestion of gluten , i have this sensitivity for 2 yrs but i had no idea about the causative agent , when i started eliminating gluten from diet the mental fogginess vanished but and i started getting milder symptoms of POIS but still significant and persist for days (5 days ) it seems like POIS have thing to do with gluten or the opposite , am thinking that may be by time of eliminating gluten i get better regarding the POIS issue but still the POIS symptoms are significant although they have reduced in severity 

also have read that gluten paly with the hormones and the secretion of adrenaline from the adrenal glands there probably a clue in this

[thereishope]

hey have you tried completely eliminating gluten for a period of at least 6 months? and if so what were your results? do you believe its worth giving a shot?

[A-Memo]

i think i will be symptoms free by 6 month of gluten free,, but i feel symptoms post ingestion of gluten i get anxiety and mental fogginess ,, if you do so for sure it is worth trying but if u are not sensitive to gluten for sure it is okay