[sparx]

There was no reaction at all to the questionnaire being posted, after sooo much work. And only one person has even filled it out.  This is the key to getting help ...

Hi Counterpoints, Took a brief look at the questionaire the day after you posted the link and thought it looked very comprehensive. Great attention to detail which must have taken plenty of effort; sincere thanks for that.

I've started working on my answers (will cut/paste into questionaire when done) but I've had no time to really sit down and do it justice due to recent travel obligations. Is there a way to edit my responses after submission?

I wouldn't worry if the early reaction to the questionaire seems slow (this might just be consistent with the way people eventually get around to posting an extended amount of information when they are feeling up to it).

May I suggest that the link is reposted here on a regular basis (perhaps so that it appears at least once on each page of TNS posts).
I've modified the signature on my TNS account to advertise it, but I may not post frequently enough (and I suspect that new TNS accounts don't display other users signatures by default).

Thanks again for your efforts!

[sparx]

 
   beta blockers : apart from imre1 (Emconcor / bisoprolol) and Counterpoints (Nadolol), anyone else tried or trying these?

[demografx]

   beta blockers : apart from imre1 (Emconcor / bisoprolol) and Counterpoints (Nadolol), anyone else tried or trying these?

Atenolol. For high blood pressure. On it for a number of years.

[Counterpoints]

sparx: I've switched to testing bisoprolol.  5 mg/day
If Beta1 selectivity is a critical factor in helping Imre1, it might be worth testing Nebivolol. 
http://en.wikipedia.org/wiki/Nebivolol

The beta1 selectivity of bisoprolol is about twice that of atenolol, and the beta1 selectivity of nebivolol is about 3.5 times that of bisoprolol.  (As far as I know).  Nadolol is a non-selective beta blocker.

I *do* notice a difference between Nadolol and bisoprolol.  I will explain after I have tested it for awhile longer (I have been using it for about 4 days).

Interesting comment on the nadolol wikipedia page:
"A recent study found that, in certain adults with ADHD that had not responded to traditional therapies, or were unable to tolerate them, the addition of nadolol saw increase in attention and focusing capacities, along with a decrease in anxiety, impulsiveness, and somatic discomfort."

And from the bisoprolol page:
"The drug is also used to treat other conditions, including dysautonomia, anxiety and hyperthyroidism (over active thyroid gland)"

[girlwind]

I'm embarrassed to say that my prejudice comes from the fact that if it were psychosomatic (which I used to believe exclusively), then I - with all my considerable willpower, strength, intelligence, etc. - can't bear to admit that I have been unable to unravel my POIS - in fact not even make a dent! -  after 30 years of strenuous effort, including psych meds, over-the-top exercise, and marathon talk therapy! In addition, I  endlessly chased numerous "spiritual" paths and practitioners...to no avail. So....if the Great Unlicensed Doctor (me) couldn't cure my own POIS with a frontal attack on anything psychological/spiritual, "how could it be psychosomatic"? Make sense?

As Counterpoints states, we should be open to any and all possibilities of POIS development and cure. At this stage, I'll even consider aliens from UFO's having conducted wild experiments on us pre-natally with a cure of Kryptonite!

Psychosomatic implies that the mind is the "source" of the problem.  But who's to say that the effects of abuse damage us only
psychologically. There's also the possibility that ANY kind of abuse to one as a child may cause PTSD symptomology that is NOT
ONLY psychologically, BUT ALSO physically damaging to one's brain, immune, nervous, and hormonal systems. This goes beyond
what is traditionally called psychosomatic. A brilliant acupuncturist/herbalist/medical researcher from southern CA writes about
it on his website.

"Patients with a long history of emotional, physical, and sexual abuse may find that conventional psychotherapeutic and
pharmacological treatments have limited benefit in addressing recurrent episodes of anxiety, panic, and intrusive memories.
Our clinical experience in this matter demonstrates that post traumatic stress disorder is a type of auto-immune disease that
targets the nervous and hormonal systems as a result of antibody responses to excessive levels of stress induced neurotrans-
mitters and hormones. Individualized Chinese herbal formulas that regulate the immune system, clear antibodies to neuro-
transmitters and hormones, and treat secondary infections and chemical exposures that influence immune function can assist
in reducing PTSD symptoms to improve cognitive and emotional functioning."

[Counterpoints]

I think of "psychosomatic" in the broader sense.  Things that happen to us do affect the chemistry of our brains.  People with various "psychological" conditions will have unusual metabolisms in certain regions of the brain.  When treated for these problems, these areas of the brain "re-activate". 

[demografx]

This is the Merriam-Webster definition of psychosomatic - - that I had in mind when writing my post above:

of, relating to, involving, or concerned with bodily symptoms caused by mental or emotional disturbance

[John21 (OP)]

I am doing some amazing flip flopping on this Candida issue. It did indeed seem like sugar threw me for a loop so I began adjusting my diet as directed by some websites. After a few days I convinced myself that it is too bizarre, and treated myself to an ice cream cone type product (one of those wrapped ones in the freezer) and that night my insomnia was ferocious.  So again I am endeavoring to go veggies + meat (+eggs, nuts) for a good long while, and start taking some probiotics and anti-Candida supplements.  The apparent connection of sugar with my insomnia is one clue; the amazing disappearance of my POIS while on garlic is another clue. With this, and the fact that some people believe strongly in the reality of Candida overgrowth, it is enough to convince me to go down a road of strict eating.

I had previously been suspicious of a connection between sugar consumption and my insomnia. At the time I wondered if perhaps my blood glucose levels were abnormal at night causing me to wake up, so I bought a glucose meter and took some readings.  I followed this up with my doctor and it was ruled out by her opinion and with tests she (reluctantly) sent me to. I have also previously been suspicious of bread. For years I had made homemade whole wheat bread everyday. When I switched to bought bread (again whole wheat) I noticed that my insomnia improved a little. I could never make sense of this. Perhaps the amount of yeast or sugar consumed contributed to Candida.

If Candida is behind POIS in some cases, perhaps it is caused hormonally. Just as a pregnant woman is more susceptible to a vaginal yeast infection, perhaps some people are more susceptible to Candida internally when the sex hormones are flying. Perhaps early age engagement in sexual activity promotes a stronger hormonal response, helping to create the problem.

Again, my working hypothesis is that a pelvic area fungus growth is rejuvenated by blood flow to the sex organs, releasing fungus/toxins into the bloodstream causing our symptoms.

[Animus]

There was no reaction at all to the questionnaire being posted, after sooo much work. And only one person has even filled it out.  This is the key to getting help ...

Hi Counterpoints, Took a brief look at the questionaire the day after you posted the link and thought it looked very comprehensive. Great attention to detail which must have taken plenty of effort; sincere thanks for that.

I've started working on my answers (will cut/paste into questionaire when done) but I've had no time to really sit down and do it justice due to recent travel obligations. Is there a way to edit my responses after submission?

I wouldn't worry if the early reaction to the questionaire seems slow (this might just be consistent with the way people eventually get around to posting an extended amount of information when they are feeling up to it).

May I suggest that the link is reposted here on a regular basis (perhaps so that it appears at least once on each page of TNS posts).
I've modified the signature on my TNS account to advertise it, but I may not post frequently enough (and I suspect that new TNS accounts don't display other users signatures by default).

Thanks again for your efforts!

Counterpoints,
I'd like to take a look at that questionnaire. I recently just joined this forum.
Where can I find it?
Thanks,
Animus.

[Animus]

John21, and Counterpoints, thank you very much for shedding more light on the psychosomatic.

I'm embarrassed to say that my prejudice comes from the fact that if it were psychosomatic (which I used to believe exclusively), then I - with all my considerable willpower, strength, intelligence, etc. - can't bear to admit that I have been unable to unravel my POIS - in fact not even make a dent! -  after 30 years of strenuous effort, including psych meds, over-the-top exercise, and marathon talk therapy! In addition, I  endlessly chased numerous "spiritual" paths and practitioners...to no avail. So....if the Great Unlicensed Doctor (me) couldn't cure my own POIS with a frontal attack on anything psychological/spiritual, "how could it be psychosomatic"? Make sense?

As Counterpoints states, we should be open to any and all possibilities of POIS development and cure. At this stage, I'll even consider aliens from UFO's having conducted wild experiments on us pre-natally with a cure of Kryptonite!

demographx,
My POIS is definitely not psychosomatic.
And I doubt yours is too- after 30-some odd years. 
I put forth my theory on the cause in my first (very long) email.  But I'll tell you, it really makes sense to me.  I've had a very acute case of POIS, which was greatly alleviated after I had surgery to remove my testicles.  I still have some POIS, but it is much abated.  My plan is to have my seminal vesicles surgically removed and my prostate shrunk, to finish off POIS.
I'll let you all know if it works.

[nopoison]

Hi,

3 concepts in this post:

1.- information gathering: I read about many topics, ideas and diets and I think that it should be centralized in some place. For a newcomer and a longterm visitor we don`t have a place to skim through and a reference of terms on which we/you operate (I dont know many of them - and have to look them up in a dict ... repeatedly .
If there is an interest in this Idea - we could set up some place or make a research on tools to gather the knowledge in an accessible way (like wiki or wikia for example). Please tell me what you think about that.

2.- garlic: yesterday I had an orgasm unshielded by garlic diet. Results are as follows: lighter brain fog (due to a better diet probably), stiffnes in neck as always and usual symptoms like backpains and bowel pains. I work in IT and feel the effects of pois overwhelmingly at my daily job. since the garlic diet its much lighter. there is a real change in the attitude actually, I feel much more hopeful after that garlic invention and wanted to share it with you

3.- diet: I have to tell you that I recently added fresh citruses to my diet - I feel much much better after eating them, I have much more energy! (they dont react with POIS directly thou)

good luck.
James

[nopoison]

Important terms and clues:

• http://en.wikipedia.org/wiki/Fibromyalgia [nofollow]
  

  Physical treatments
  Studies have found exercise improves fitness and sleep and may reduce pain and fatigue in some people with fibromyalgia.[143] Many patients find temporary relief by applying heat to painful areas. Those with access to physical therapy, massage, or acupuncture may find them beneficial.[144] Most patients find exercise, even low intensity exercise to be extremely helpful.[145] Osteopathic manipulative therapy can also temporarily relieve pain due to fibromyalgia.[146]
  Whirlpool therapy is very beneficial. It's important that the water temperature be at least 95 degrees. This therapy was recommended by the Fibromyalgia Clinic at Mayo.
  

  NEW RESEARCH undertaken at the Human Performance Laboratory at Karlstad University by Swedish PHD, Sven-Åke Bood [142]concludes that regular floatation tank sessions can drastically relieve chronic stress related ailments. Studies involving 140 people with long-term conditions such as anxiety, stress, depression and fibromyalgia found that more than three quarters experienced noticeable improvements.

  
  check out also:
  • http://livingwithcfs.wordpress.com/ [nofollow]
  • http://www.ncbi.nlm.nih.gov/pubmed/17872383?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log [nofollow]$=relatedarticles&logdbfrom=pubmed
  
  
• http://en.wikipedia.org/wiki/Immune_system#Disorders_of_human_immunity [nofollow]
• http://en.wikipedia.org/wiki/Chlamydia_trachomatis [nofollow]
• http://en.wikipedia.org/wiki/Sj [nofollow]ögren%27s_syndrome
• http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome [nofollow]

[Animus]

Hi,

3 concepts in this post:

1.- information gathering: I read about many topics, ideas and diets and I think that it should be centralized in some place. For a newcomer and a longterm visitor we don`t have a place to skim through and a reference of terms on which we/you operate (I dont know many of them - and have to look them up in a dict ... repeatedly .
If there is an interest in this Idea - we could set up some place or make a research on tools to gather the knowledge in an accessible way (like wiki or wikia for example). Please tell me what you think about that.

2.- garlic: yesterday I had an orgasm unshielded by garlic diet. Results are as follows: lighter brain fog (due to a better diet probably), stiffnes in neck as always and usual symptoms like backpains and bowel pains. I work in IT and feel the effects of pois overwhelmingly at my daily job. since the garlic diet its much lighter. there is a real change in the attitude actually, I feel much more hopeful after that garlic invention and wanted to share it with you

3.- diet: I have to tell you that I recently added fresh citruses to my diet - I feel much much better after eating them, I have much more energy! (they dont react with POIS directly thou)

good luck.
James

Hi,

3 concepts in this post:

1.- information gathering: I read about many topics, ideas and diets and I think that it should be centralized in some place. For a newcomer and a longterm visitor we don`t have a place to skim through and a reference of terms on which we/you operate (I dont know many of them - and have to look them up in a dict ... repeatedly .
If there is an interest in this Idea - we could set up some place or make a research on tools to gather the knowledge in an accessible way (like wiki or wikia for example). Please tell me what you think about that.

2.- garlic: yesterday I had an orgasm unshielded by garlic diet. Results are as follows: lighter brain fog (due to a better diet probably), stiffnes in neck as always and usual symptoms like backpains and bowel pains. I work in IT and feel the effects of pois overwhelmingly at my daily job. since the garlic diet its much lighter. there is a real change in the attitude actually, I feel much more hopeful after that garlic invention and wanted to share it with you

3.- diet: I have to tell you that I recently added fresh citruses to my diet - I feel much much better after eating them, I have much more energy! (they dont react with POIS directly thou)

good luck.
James

Hello James,
Welcome. I'm a newbie as well.
1. I think it's a great idea to establish a precis, and a central webpage for info, background, theories, etc.  I was thinking the same thing yesterday. There we could summarize everything without having to go through the 50+ pages of communication.
We could start a Wikipedia entry for POIS, each add to it and contribute to shaping it.  It would be like a clearinghouse of information for all of us.
I've never made a Wiki entry before, but I have some time to figure it out. We should also include that interesting introductory video by girlwind.
 
2. I'm interested in trying that Garlic remedy myself to test it.
Sincerely,
Animus

[Counterpoints]

Dear Animus,
The questionnaire can be found at http://pois.olympe-network.com
Your input would be of great value.

sparx: Right now there is no option to edit your responses.  However, there will be an opportunity in a couple months to add to what you've written, or to repost your responses with new information.

[martin88]

Thanks again Counterpoints for all your wonderful work, and also to Marnia and the other unknown "many people" who have also contributed.

And thanks to Imre who came back to us to give a feedback on his own success. It's a valuable action.

At least this is not psychosomatic and not so far than pois i think :
http://en.wikipedia.org/wiki/Refractory_period#Sexual_refractory_period

Demografx, in your religious teaching, was it mentionned that sex is dirty/bad or orgasm is. (I don't have pois if I have sex without orgasm, or just a 10% of very short pois, which is not pois because it's not post orgasmic  []). If the idea of general sexuality is the problem you should have pois symptoms every time you have sex without orgasm which is not the case i'm sure. Was there other teaching of prohibition causing p?is ?

Sorry for the next one again ! When you're drunk after a glass of wine how can you know it's not psychosomatic ?
-Special effect, you'll never reproduce it without orgasm.
-Strong and very noticeable effect. (as Hjkl said, i'm at 20% of my normal energy level)
-Everytime i have an orgasm i'm 100% sure i'll have pois.

I strongly believe that pois is not psychological for me, but even if it is, some people are less able to deal with psychological problems because of a weak nervous system, brain or whatever. So it's psychological but not only.

It's not so important to know if pois is psychological. What is important is, can it be cured with a psychotherapy ? Maybe some people will be able to cure it like that and i encourage this, but personally i couldn't after years of therapy including psychoanalysis, hypnosis and psychotherapy. That's why i need a physical treatment (true for me).

[demografx]

Correct me if I'm wrong, but I think that I'm in agreement with everyone, i.e., POIS is largely physical, and not psychologically rooted - ALTHOUGH early psychological trauma may have contributed to its early development.

martin88, I was simply taught that "sex is dirty" (and that I will burn for eternity for engaging in that shameful behavior) but you're right: my sex without orgasm does NOT cause POIS.

QUESTION: Does anyone else feel that POIS symptoms are "otherworldly"? Don't write me off as a UFO nutcase, I mean that my POIS symptoms are unlike anything else I experience in life, e.g., the exhaustion is a "special" kind of exhaustion only experienced after orgasm; my burning fingertips are surreal and drive me crazy and I don't know why; my "disconnect" with my surroundings are, as well, unlike other periods of social and other withdrawal.

Would be curious to know if any of you also feel that POIS presents uniquely felt symptoms.

[girlwind]

Correct me if I'm wrong, but I think that I'm in agreement with everyone, i.e., POIS is largely physical, and not in the least psychologically rooted - ALTHOUGH early psychological trauma may have contributed to its development.

Yes, I vote that POIS is definitely a physical dysfunction--in the body. As for the trauma aspect, it's my experience and
observation that early psychological trauma can cause both psychological AND physical damage to the body. STRESS IS
BOTH TOXIC AND DAMAGING to a physical organism, (the effects of spikes in cortisol can damage brain cells), and being
abused in any way is undoubtedly stressful. Some people resolve their issues and heal more quickly from abuse than
others; and some perpetuate it by medicating themselves with various addictions, both substance and behavior addictions
(to numb/avoid their pain), which can damage them even more.  So, seen in this light, even type 2 diabetes could possibly
be considered the result of early trauma--abuse leading to stress, leading to food addiction, up to the point that it ends
up as a physical disease.

QUESTION: Does anyone else feel that POIS symptoms are "otherworldly"? Don't write me off as a UFO nutcase, I mean that my POIS symptoms are unlike anything else I experience in life, e.g., the exhaustion is a "special" kind of exhaustion only experienced after orgasm; my burning fingertips are surreal and drive me crazy and I don't know why; my "disconnect" with my surroundings are, as well, unlike other periods of social and other withdrawal.

Would be curious to know if any of you also feel that POIS presents uniquely felt symptoms.

Both POIS and CFS present the same kind of symptoms for me--that spaced out, foggy brained, totally drained, and
not-quite-in-my-body feeling. I can get exacerbation of CFS symptoms from any kind of overdoing, either physical or
mental. And according to my body, orgasm fits in the category of overdoing. The worst part is explaining myself to
allegedly "normal" people, who do sometimes look at me like I am a "UFO nutcase."

Our language is missing the words to describe some of the bizarre symptoms felt with POIS. Perhaps that's one of our
missions on this forum--to come up with a solid description of the surrealness of this malady.

[demografx]

As for the trauma aspect, it's my experience and
observation that early psychological trauma can cause both psychological AND physical damage to the body. STRESS IS
BOTH TOXIC AND DAMAGING to a physical organism, (the effects of spikes in cortisol can damage brain cells), and being
abused in any way is undoubtedly stressful. Some people resolve their issues and heal more quickly from abuse than
others; and some perpetuate it by medicating themselves with various addictions, both substance and behavior addictions
(to numb/avoid their pain), which can damage them even more.  So, seen in this light, even type 2 diabetes could possibly
be considered the result of early trauma--abuse leading to stress, leading to food addiction, up to the point that it endsup as a physical disease.

Thanks much for that, girlwind. I'm suspecting more and more that I'm still a victim, 50 years later, of early psychological abuse (e.g., "sex is dirty")and brutal corporal punishment - all perpetuated by religious teachers who ran sadistically wild, and unchecked, in the '50s. And, as you point out, I'm one of those who hasn't resolved issues and healed quickly, in spite of decades of psychotherapy and psych meds. Hope I don't sound much like a whiner. If I do, don't tell me  []

[demografx]

Perhaps that's one of our missions on this forum--to come up with a solid description of the surrealness of this malady.

Excellent idea! I think the more we put the symptoms on "our planet" the less likely we are to deny the existence of this vicious ailment. I had denied it for decades, I just refused to believe that life could be that cruel!

And of course, being able to explain POIS more logically and coherently will aid those trying to help us. (But at this rate, we're coming up with a cure faster than waiting for the outside world! Long live garlic and Levitra!!)

When I told "The [self-coined] King of Dermatology" about my burning fingertips and WHY...he scoffed. He said, "OK, come in to see me the day after your next orgasm." So I did. Upon examination, he said, "Amazing. You DO have dermatitis now!" So he prescribed a special formula for my fingers (which didn't work - nothing I tried does work).

[girlwind]

Thanks much for that, girlwind. I'm suspecting more and more that I'm still a victim, 50 years later, of early psychological abuse (e.g., "sex is dirty")and brutal corporal punishment - all perpetuated by religious teachers who ran sadistically wild, and unchecked, in the '50s. And, as you point out, I'm one of those who hasn't resolved issues and healed quickly, in spite of decades of psychotherapy and psych meds. Hope I don't sound much like a whiner. If I do, don't tell me  []

I definitely do not consider you a victim or a whiner! More like a resilient persevering survivor. I think everyone on this forum
would agree that you are one of the most, if not the most, welcoming, supportive and upbeat of the people here. I empathize
with what you've been through and am grateful that you have been willing to share so many of your experiences.

One of the things that irks me most about our culture is how much we blame the victims and dismiss the perpetrators. Especially
when it comes to chronic illnesses. I've gone through this with both CFS and POIS, where some people act as if I have these conditions
because I secretly chose to have them, and that if I just got over my hypochondriac induced devotion to my wacky "imaginary illness,"
I would be all fine and better.  I don't know who's been worse--the medical doctors or the so called "spiritual" New Agers, when it
comes to laying these kind of mindless guilt trips. I think it's a tie. Though sometimes I really wish I had the voodoo to transfer my
symptoms into their bodies, so they could try them on for size, for a couple decades.