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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451243 times)

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1800 on: 01/11/2008 04:32:01 »
Demografx, it's good to have friends who are also researchers! Thanks a lot for your commitment to find a cure for pois for all of us. With Dr Waldinger, and the recent other people you were able to contact we feel less alone now. I hope we'll always grow in this direction. I understand you about the tests with lancets, I suppose it's normal because we all have our phobias, specially me, and perhaps all of us because of pois. Also I know that a lot of people have this blood/needle phobia.
In a last attempt, just in case, here are two videos about lancets. The first is explaining how quick it is. The second which is not with the lancing device, you'll understand why, is showing the size of the needle.
feature=related
I hope it will help a little bit.
I'll read about IL6 for the first time. I'm not sure we have a rare disease, it's very hard to say.  



« Last Edit: 01/11/2008 04:38:55 by martin88 »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1801 on: 01/11/2008 04:45:07 »
Demografx, it's good to have friends who are also researchers! Thanks a lot for your commitment to find a cure for pois for all of us. With Dr Waldinger, and the recent other people you were able to contact we feel less alone now. I hope we'll always grow in this direction. I understand you about the tests with lancets, I suppose it's normal because we all have our phobias, specially me, and perhaps all of us because of pois. Also I know that a lot of people have this blood/needle phobia.
In a last attempt, just in case, here are two videos about lancets. The first is explaining how quick it is. The second which is not with the lancing device, you'll understand why, is showing the size of the needle.
feature=related
I hope it will help a little bit.
I'll read about IL6 for the first time. I'm not sure if we have a rare disease or not it's very hard to say.  

Thanks very much, Martin! It has taken me YEARS to get over the phobia of even a NURSE drawing blood! I'm just not ready yet for a lancet, so thanks for NOT laughing!

And thanks for reading on IL-6.

I do believe it's rare (Disease is another question, but that's just terminology/semantics). Dr Waldinger, who specializes in sexuality medicine, only came across 5 cases of POIS in 5 years. And with all the physicians and healthcare professionals seen by this forum (I would guess in the hundreds) - - NOT ONE healthcare professional has had any idea what POIS is. And if it were more common, we would also have seen more than just ONE study (Dr. Waldinger's). But if you still doubt "rare" please tell me why.

I appreciate your compliments about aligning with researchers. It's been slow moving, though.

Counterpoints should also be thanked for helping to move the outside-professionals idea, with his proactive searching people who understand POIS.

Girlwind has been very helpful in getting the alternate therapies better understood, including laboratory testing.

Now.....let's CURE POIS in 2009!
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1802 on: 01/11/2008 05:25:04 »
I'm not sure if this registered...

My blood cortisol levels were tested, and they were high. This can be dangerous, and could very possibly be a result of POIS.  It is something we had suspected beforehand.  It was a test the research neurologist I saw on the 23rd ordered.

To everyone on this forum: I cannot advise you more strongly to go and get a cortisol blood test as soon as possible. (e.g. on monday).  Get an AM and PM test.  Try and do it while symptomatic.
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1803 on: 01/11/2008 14:51:45 »
My cortisol levels have been CHRONICALLY LOW, for many years. Especially my morning cortisol.
The last series of 4 (salivary) cortisol tests that I had in September (which included morning, noon, afternoon
and evening cortisol samples) were much more "normal" than I've ever had. This last time, most of my levels
were in the normal range. My morning sample was in low normal--could be a little better. But only my evening
cortisol was clearly out of range and too low.

I still need to continue addressing the adrenal/cortisol issue, espcially given the recent new findings that my
thyroid is in sub-normal range. But I am pleased to see that the efforts I have made to improve my adrenal
functioning have paid off a bit.I attribute this improvement to the supplements that I've been taking each day
for adrenal support, which has included: 3-5 grams B5, 5 grams Vitamin C, 25-50 mg. DHEA, 6-8 capsules
of either Imperial Siberian Ginseng, or Planetary Formulas Schizandra Adrenal Support, 6 tablets maca,
and 6 capsules Ashwaganda (newly added).
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1804 on: 01/11/2008 14:52:17 »
I'm not sure if this registered...

My blood cortisol levels were tested, and they were high. This can be dangerous, and could very possibly be a result of POIS.  It is something we had suspected beforehand.  It was a test the research neurologist I saw on the 23rd ordered.

To everyone on this forum: I cannot advise you more strongly to go and get a cortisol blood test as soon as possible. (e.g. on monday).  Get an AM and PM test.  Try and do it while symptomatic.


I just had a standard blood test (which I can't read, except for GP's comment, "all looks good") Would this typically test blood cortisol? I have 2 pages of results, what should I look for? Thanx!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1805 on: 01/11/2008 14:55:58 »
Girlwind, can an accupuncturist or other naturalist draw my blood for these tests?

Beating a dead horse,
Demografx
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1806 on: 01/11/2008 14:58:36 »
I just had a standard blood test (which I can't read, except for GP's comment, "all looks good") Would this typically test blood cortisol? I have 2 pages of results, what should I look for? Thanx!

Most standard blood tests--like the Complete Blood Count or the Blood Chemistry don't include cortisol tests, and most doctors
seem to disregard cortisol level testing. Unless you specifically ask/insist/demand for your cortisol to be tested.

That Comprehensive Male Profile I from ZRT includes 4 salivary cortisol tests. (see my post above) Since all it requires is spitting into
plastic vials, four times during the day, you might consider that.

Girlwind, can an accupuncturist or other naturalist draw my blood for these tests?

Yes! I'm sure an acupuncturist would be willing to do that for you. That's actually a good idea.
« Last Edit: 01/11/2008 15:02:49 by girlwind »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1807 on: 01/11/2008 15:07:52 »
On a related note to Counterpoints' concern about adverse effects of drugs/remedies, I removed the Oxytocin cartoon I posted. Unlikely someone would take it because of a cartoon, but I'm not taking chances!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1808 on: 01/11/2008 15:11:05 »
...Since all it requires is spitting into
plastic vials, four times during the day, you might consider that...

Oh my, Girlwind! I was taught that spitting/expectorating is impolite!!! :o
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1809 on: 01/11/2008 15:12:24 »
SOME INFO. ON ADRENAL DYSFUNCTION AND CORTISOL LEVELS

"The destructive effect of high cortisol levels

What is cortisol? In its normal function, cortisol helps us meet life's challenges by converting proteins into
energy, releasing glycogen and counteracting inflammation. For a short time, that’s okay. But at sustained
high levels, cortisol gradually tears your body down.

Sustained high cortisol levels destroy healthy muscle and bone, slow down healing and normal cell regeneration,
co-opt biochemicals needed to make other vital hormones, impair digestion, metabolism and mental function,
interfere with healthy endocrine function; and weaken your immune system.

Adrenal fatigue may be a factor in many related conditions, including fibromyalgia, hypothyroidism, chronic
fatigue syndrome, arthritis, premature menopause and others. It may also produce a host of other unpleasant
symptoms, from acne to hair loss.

The loss of DHEA production

When the adrenals are chronically overworked and straining to maintain high cortisol levels, they lose the capacity
to produce DHEA in sufficient amounts. DHEA (the full name is dehydroepiandrosterone) is a precursor hormone
to estrogen, progesterone, and testosterone, and is necessary to moderate the balance of hormones in your body.
Insufficient DHEA contributes to fatigue, bone loss, loss of muscle mass, depression, aching joints, decreased sex
drive, and impaired immune function.

Testing for adrenal fatigue

Conventional medicine is truly wonderful at treating disease-state conditions. Unfortunately its focus on drugs
also tends to suppress early-stage symptoms rather than treat their underlying causes. This can have the effect
of delaying treatment until a disease state has developed. This is true in the case of adrenal fatigue cortisol test-
ing. In the conventional standard of care, any cortisol level within a very broad range is considered normal, and
anything outside that range indicates disease.

In our practice, we measure cortisol levels at several points in the day to track the adrenals’ day–night pattern
(called the “diurnal rhythm”) using a panel of simple saliva tests. We hope to see cortisol elevated in the morning
to help you get going, lower but steady throughout the day to sustain energy, then fall in the evening to support
restful sleep.

In the early stages of adrenal dysfunction, cortisol levels are too high during the day and continue rising in the
evening. This is called “hyperadrenia.”
In the middle stages, cortisol may rise and fall unevenly as the body strug-
gles to balance itself despite the disruptions of caffeine, carbs and other factors, but levels are not normal and are
typically too high at night. In advanced stages, when the adrenals are exhausted from overwork, cortisol will never
reach normal levels (“hypoadrenia”).

Conventional medicine will detect only the extremes of these conditions, when damage to the adrenals has already
occurred
(Cushing’s disease and Addison’s disease). Within those extremes, you can feel miserable and still be told
your cortisol levels are normal. But by responding to early-stage symptoms of adrenal fatigue, we can reverse the
 developing dysfunction."



 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1810 on: 01/11/2008 15:15:26 »
...That's actually a good idea...

Whew! Thanks, girlwind, I was afraid I was striking out with you! ;D
 

Offline rock27

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1811 on: 01/11/2008 15:17:37 »
Demografix,

On my test report it said clearly 'cortisol 8 am' so I guess if you don't see 'cortisol' it was not included. I don't know another name for cortisol anyway. My 'in pois' cortisol 8 am was 306 nmol/L, so 9% above the lower borderline of the normal range (250-850 on my form). I will update when new info is available.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1812 on: 01/11/2008 15:19:57 »
Girlwind, sincere thanks for the cortisol tutorial!

Do you have any similar info on prolactin? Including what relationship, if any, you think it has to POIS?

I'm speaking with my researcher friend mid-week and I'd like to be more prepared; he thinks there may be a relationship between POIS and IL-6, and a study I posted yesterday shows a link between prolactin and IL-6. Thanks!!
« Last Edit: 01/11/2008 15:22:05 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1813 on: 01/11/2008 15:20:54 »
Demografix,

On my test report it said clearly 'cortisol 8 am' so I guess if you don't see 'cortisol' it was not included. I don't know another name for cortisol anyway. My 'in pois' cortisol 8 am was 306 nmol/L, so 9% above the lower borderline of the normal range (250-850 on my form). I will update when new info is available.

Thanks, Rock27!
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1814 on: 01/11/2008 15:43:30 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1815 on: 01/11/2008 15:57:07 »
Girlwind, sincere thanks for the cortisol tutorial!

Do you have any similar info on prolactin?

SOME INFO ON PROLACTIN

"This protein is produced by the pituitary gland and also by the uterine lining. Its best-known function is to promote
milk production in lactating (breastfeeding) women. Elevated prolactin levels (called hyperprolactinemia) may interfere
with ovulation and menstrual cycle regularity. They may also cause galactorrhea (inappropriate milk secretion) and de-
creased libido (sex drive)."

Effects

"Prolactin has many effects including regulating lactation, orgasms, and stimulating proliferation of oligodendrocyte
precursor cells. It stimulates the mammary glands to produce milk (lactation): Increased serum concentrations of prolactin
during pregnancy cause enlargement of the mammary glands of the breasts and increases the production of milk. However,
the high levels of progesterone during pregnancy act directly on the breasts to stop ejection of milk. It is only when the
levels of this hormone fall after childbirth that milk ejection is possible. Sometimes, newborn babies (males as well as females)
secrete a milky substance from their nipples. This substance is commonly known as Witch's milk. This is caused by the fetus
being affected by prolactin circulating in the mother just before birth, and usually stops soon after birth.

Prolactin provides the body with sexual gratification after sexual acts: The hormone counteracts the effect of dopamine,
which is responsible for sexual arousal. This is thought to cause the sexual refractory period. The amount of prolactin can
be an indicator for the amount of sexual satisfaction and relaxation.
Unusually high amounts are suspected to be responsible
for impotence and loss of libido (see hyperprolactinemia Symptoms). Prolactin also stimulates proliferation of oligodendrocyte
precursor cells. These cells differentiate into oligodendrocytes, the cells responsible for the formation of myelin coatings on
axons in the central nervous system. Prolactin also has a number of other effects including contributing to surfactant synthesis
of the fetal lungs at the end of the pregnancy and immune tolerance of the fetus by the maternal organism during pregnancy;
it also decreases normal levels of sex hormones — estrogen in women and testosterone in men." Prolactin delays hair regrowth
in mice."


"Most pituitary hormone production is controlled by signals that come in the form of other hormones. That means the
pituitary acts only when it receives a stimulating hormone message from elsewhere in the body. For example, when
thyroid activity is low, the hypothalamus, a higher brain center, releases the hormone TRH to stimulate the pituitary to
release thyroid-stimulating hormone TSH. (Surprisingly, the hormone TRH, in addition to stimulating the pituitary release
of TSH, also triggers the release of prolactin.)

Prolactin is a bit different from all other pituitary hormones. In most cases, production of pituitary hormones is normally
turned "off," and releasing hormones are sent to stimulate the pituitary when more pituitary hormones are needed. In the
case of prolactin, however, prolactin secretion is generally turned "on" unless the hypothalamus secretes the prolactin-
inhibiting hormone dopamine to turn prolactin production "off."
Dopamine travels from the hypothalamus to the pituitary
in a small network of veins called a venous portal system. Anything that interferes with this fine network may prevent this
inhibitory message from reaching the pituitary gland. The result is that the pituitary will produce too much prolactin. In
some cases this overstimulation induces the overgrowth of prolactin-producing cells, and a small pituitary tumor (adenoma)
is the result.

When the hypothalamus sees that prolactin levels are too high, it manufactures more dopamine, trying to get prolactin levels
back to normal. Unfortunately, if the message doesn't get through, the pituitary continues to produce and release prolactin.
Meanwhile, the high levels of dopamine in the hypothalamus can block the release of another hormone, GnRH, which is
necessary for normal ovarian function".

[/i]



SOURCES:  wikipedia.org,  yourtotalhealth.ivillage.com
« Last Edit: 01/11/2008 15:58:46 by girlwind »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1816 on: 01/11/2008 16:05:47 »
SOME INFO ON PROLACTIN...


Thanks again, girlwind!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1817 on: 01/11/2008 17:11:14 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.

Sure sounds like POIS!
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1818 on: 01/11/2008 17:50:38 »
With regards to prolactin, I spent several weeks trying cabergoline as a cure to POIS last year. Cabergoline is supposed to suppress prolactin prodution in the pituitary gland, however it had little real effect on my POIS symptoms.

So either the drug was not doing what it was supposed to, or in the case of my POIS symptoms, reducing prolactin levels didn't have much effect.

Of course other people's POIS symptoms may be due to different causes to my own, and prolactin may well play a key role for many people here - just wanted to add that there did not appear to be a strong link with prolactin in my own case.
 

Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1819 on: 01/11/2008 18:58:59 »
Were on a Cortisol kick.  Check this out!

Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.

Sure sounds like POIS!

Many of these same symptoms are indicative of LOW THYROID as well. That's probably because the adrenals and thyroid
work together as part of the same endocrine system, and when one is burnt out--usually the adrenals, then the thyroid has to
pick up the extra slack.

I spoke with a naturopath about this adrenal/thyroid connection, and she told me that anything that helps the adrenals regain
a healthy state, will indirectly help the thyroid. As long as the thyroid is not already "damaged" and very hypothyroid--which
necessitates direct thyroid treatment.
« Last Edit: 01/11/2008 19:48:20 by girlwind »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1820 on: 02/11/2008 00:10:32 »
I'm just not ready yet for a lancet

I do believe it's rare (Disease is another question, but that's just terminology/semantics). Dr Waldinger, who specializes in sexuality medicine, only came across 5 cases of POIS in 5 years. And with all the physicians and healthcare professionals seen by this forum (I would guess in the hundreds) - - NOT ONE healthcare professional has had any idea what POIS is. And if it were more common, we would also have seen more than just ONE study (Dr. Waldinger's). But if you still doubt "rare" please tell me why.

I like your attitude when you say "not yet". This means you'll do it later. Very good idea to do this with an acupuncturist.

I don't know if it's a rare disease or not but :
Initially it was mentionned :
In a lot of religions, so it's not a new concept.
In "serious" medical books written by occidental MD, till 1980 and even later. As I said before I have one of these books where they say that all teenagers who have too much orgasms early in their life will destroy their nervous system.
In chinese medicine it's common (weakness after sex).
In some shows, movies you have allusions by actors.

Perhaps a lot of pois don't make the connection. I was like that for 5 years without realizing so it's possible that people don't realize for more than that. Some cases will think they can't change this, they are like that and that's all.

Other cases of pois who know the connection will think everybody is like that and that it's not a disease, it's simply normal. There is nothing to do.

Also I think a lot of cases of what they call "mental illness" are actually pois.

Another consideration is that usually pois begins very early in life before the first sexual experience. Pois causes mental effects (shyness, reserved, anxiety). People affected by this won't talk easily about their sexuality, they will never see a sexologist like Dr Waldinger.

The pois who will be able to talk will be classified as anxious  by their MD. They are but this could be avoided.

Since pois people are fatigued they won't be the ones who will participate in studies to decide if sexuality causes fatigue or not. I heard a joke in a one man show :
You see all the empty places in the auditorium? These are vegans who are still in the parking trying to remove their seat belts !

I hope to answer your question. Internet is a fantastic tool for all pois who want to stay anonymous.
« Last Edit: 02/11/2008 13:24:46 by martin88 »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1821 on: 02/11/2008 00:17:47 »
Counterpoints, what does your doc think about your high cortisol (probably it's too soon for this question) ? Do you think it could be the meds you are taking ?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1822 on: 02/11/2008 00:38:08 »
Martin, you make an excellent case for POIS being more common than it seems! I could relate to all the variations you mentioned at several different points in my life. Especially the time it takes to see a connection between orgasm and postorgasmic effects. That is why my memory earlier than 30 years ago doesn't register POIS: I was simply not attuned to looking for POIS. I know I had a lot of depression, and that could have come from POIS, but perhaps it didn't. Periods of poor concentration have been there as far back as I can remember and that may have been ADHD, but it could have been POIS!

I might add that denial played a big role with me. I never wanted to admit to myself that this (POIS) could be happening to me. For many years, I would think, "THIS time it (sex) will be safe." It never was.
« Last Edit: 02/11/2008 18:06:57 by demografx »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1823 on: 02/11/2008 04:20:21 »
About cortisol I would recommend if possible to do a saliva test and a blood test at the same time, so we'll be able to see the differences. If we want to make research by ourselves on this, the saliva test would be very useful(to make more tests and find what is really effective to decrease cortisol). For me it's not easy to make a test at the hospital, I have to wait 3 weeks to have an appointment with my doctor. Then it's an other full day for one cortisol test. In pois I'm usually stressed to go in places full of people for a test, so cortisol will perhaps be high because of this (am I wrong?)

About thyroid:
Girlwind, you probably know this, when you stimulate the thyroid you can increase the problem with the adrenals, that's what some sources (bad or not ?) are saying. Because of this you can stop your thyroid treatment even if it's needed.
I took ashwagandha a few weeks ago for the effect on HPA axis and my pois was aggravated, I can't explain why. Also It's an aphrodisiac. Specially for men with pois maybe it's not the best thing. This was a problem for me with ginseng.
« Last Edit: 03/11/2008 12:59:13 by martin88 »
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1824 on: 02/11/2008 13:45:54 »
Periods of poor concentration have been there as far back as I can remember and that may have been ADHD, but it could have been POIS!
POIS is certainly attacking our own weaknesses:
http://www.eschoolnews.com/news/top-news/index.cfm?i=35148&CFID=14657829&CFTOKEN=45799745
That stress drives changes in fingertip temperatures that appear to fluctuate differently than do those in non-ADHD patients
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1824 on: 02/11/2008 13:45:54 »

 

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