Author Topic: Intro to the Community  (Read 7206 times)

Dirkstar

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Intro to the Community
« on: November 17, 2016, 10:53:38 AM »
POIS may have destroyed my life. As an engineer, the impact to my cognitive function alone is tangible and devastating. I have also developed early onset Parkinson's (at 46) without any family history, except my half-brother who seems to be going through the same thing. My major symptoms are: Brain fog including short term and long term amnesia, headache, nausea, sleeplessness, and hypersensitivity especially to sound. These symptoms onset gradually within 30 minutes of orgasm and to a lesser degree with "edging". Years ago it was clear that these symptoms gradually increased and peaked at 3 days after O and then declined over the next 5-10 days. These days I just feel like hell for 10 days. The effects are cumulative with each O. I've been experiencing these symptoms as a profound acute event for since my mid 30s but I suspect my poor performance at college is related. A (unusually insightful) neurologist 16 years ago suspected seminal fluid prostaglandins sensitizing spinal neurons to pain/sensation and prescribed Advil (COX-2 inhibitors) 20 minutes prior to sex. THIS IS 80-90% EFFECTIVE and thus validates his theory. Unfortunately COX-2 inhibitors are not practical for regular use. Recent use of Tylenol before bed clearly helps me sleep better, but that's not a long term solution either. I have a high sex drive and probably masturbate too much so I've blamed myself and tried to control the disease behaviorally. This hasn't worked very well.

Since the Parkinson's is developing rapidly, I am now aggressively pursuing formal diagnosis and treatment. I'm discovering the ugly side of the business of medicine (some natural due to the complexity of medicine and the need to make a buck, some probably forced on them by government cost pressures): Specialists are generally interested in conditions they understand and can monetize. The Austin Diagnostic Clinic, representing a large number of endocrinologists in Austin, told me categorically yesterday that they would not see me for POIS, without explanation. I spent $550 out of pocket last week for a world-famous neurologist in Houston that writes textbooks about Parkinson's and he never heard of POIS, hypersensitivity as I described it, or a link between this hypersensitivity and Parkinson's. He and his medical staff were not interested in investigating POIS further or finding the right doctor/researcher.

Thank you to the creators and maintainers of this forum. It is troubling though that there doesn't seem to be much recent activity. I encourage any sufferer/researcher/clinician/author to feel free to contact me.

Quantum

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Re: Intro to the Community
« Reply #1 on: November 17, 2016, 02:55:40 PM »
Hi Dirkstar,

Thanks for sharing your POIS case profile. 

You could re-post it in the POIS summaries and histories thread I have talked to you about in antoher thread, which is at http://poiscenter.com/forums/index.php?topic=81.msg327#msg327 .


There is much interesting and valuable information on the forum, take your time and find what may be useful for you.

If you had found this forum earlier, that would have spared you $550.  You would have known that only 3 or 4 specialists worldwide knows about POIS and have some interest in it.  The remaining general practitioners and specialists have absolutely no knowledge about POIS, and will answer you by saying either they have no solution, no interest, or will simply send you to a psychiatrist.  Some will have many blood tests an other tests made like a scan, and they will all come back normal, so back to square one:  no solution, no interest, or referral to a psychiatrist....

There is no clinical test so far for POIS diagnostic.  There is a scientific study currently ongoing, that has been founded by the members of this forum.  Results should come out in 2017, and attract some attention to POIS in the medical research field.  Another study is suppose to be ongoing, by Dr Waldinger, the one who first published about our disorder, and the one who has coined the "Post Orgasmic Illness Syndrome" name.

Ibuprofen is used by some members, too.  But no single one method works for all POIS sufferers, so there may be many sub-types of POIS, sharing a common manifestation pattern  ( I have an ongoing project of a POIS Types Chart, see at http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 )



You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Dirkstar

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Re: Intro to the Community
« Reply #2 on: November 17, 2016, 03:05:00 PM »
Thank you very much quantum I will. Indeed the neurologist I saw in Houston was also board certified in psychiatry so I thought he would have a broader interest. He didn't except to prescribe something for what he saw as OCD. I has a strong impression that my primary care physician thought I was a hypochondriac, insane or both until the Parkinson's kicked in. And just now I found an endocrinologist outside of Austin that says he needs a justification if not a diagnosis from my PCP for POIS and I suspect I know how its going to go. Nice to commiserate with you guys anyway.

demografx

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Re: Intro to the Community
« Reply #3 on: November 18, 2016, 02:30:46 PM »
Dirkstar, best wishes!

Many thanks for coming forward with your great story.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Quantum

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Re: Intro to the Community
« Reply #4 on: November 19, 2016, 10:40:32 AM »
Dirkstar, have you ben able to keep your engineering career in track, despite POIS ?


If I understand what you wrote, you were relatively POIS-free during your younger years, and that would explain why you were able to get your engineering degree ?

As you may know, many POISers with onset during teenage years have said they dropped out of college, not able to go on, even if they had very good results in elementary school.

When I discovered this forum, I was shcked to learn that most others have cognitive symptoms, and that I was in part "lucky"- if such a thing is possible when talking about POIS ! - because I have no cognitive symptoms when i am in a POIS attack, but more emotional symptoms than the average, however.  That led me to work on an hypothesis that there are "clusters" of POIS symptoms ( see at http://poiscenter.com/forums/index.php?topic=2027.msg15927#msg15927 ), and depending of one's physiological specifics, some branches in the tree of symptoms manifest, and not others.  I have found, from research done for cancer, depression and fro some auto-immune diseases, that the cognitive cluster and emotional cluster of symptoms could be related to the immune upregulation of two enzymes of the tryptophan metabolism ( IDO and TDO), producing kynurenine, and that can lead to the production of different toxic products, resulting in different results, either cognitive symptoms, emotional symptoms, or a mix of both ( if interested, you can see more details at http://poiscenter.com/forums/index.php?topic=1988.msg15559#msg15559 ).  The excitotoxicity implied by these toxic products ( mainly, quinolinic acid, and kynurenic acid) is not far from what you mention about Parkinson's disease.






« Last Edit: November 19, 2016, 10:42:50 AM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

b_jim

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Re: Intro to the Community
« Reply #5 on: November 19, 2016, 12:16:56 PM »
Welcome, good job !
Taurine = Anti-Pois
Lyme disease "cured" in 2020.

Dirkstar

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Re: Intro to the Community
« Reply #6 on: November 19, 2016, 07:17:35 PM »
Thanks b_jim!

Quantum,

Nah, my life has been tumultuous, and totally self-imposed. I had severe, crippling emotional issues in my teens and early twenties, failing out of the university electrical engineering program. Guess what I'm suspecting now. I got a degree in Computer Science many years later and worked in the semiconductor (chip) industry in R&D most of my life. The hypoglycemia I suspected then (profound loss of energy, near passing out, intense hunger) is curious too. I believed that was controlled by physical fitness. I continued to have emotional and self-esteem issues, just not as catastrophic as at university, throughout my life, evidenced by a decision at 35 to join the army reserves to make a change (from frustrating work, marriage, and sex life). Wrecked my work-in-progress for a Master's in EE and didn't help fundamentally. Engineering career has been rocky since (including a failed medical devices effort over the last 4 years). I'm not a perfect person, but my difficulties seem excessive. Your theories regarding cognitive and emotional dysfunction are therefore very interesting. I'm unemployed at the moment (go figure) so a little distracted but I intend to go through your pathway descriptions. I am also going try the niacin recipe first then look at your pack.

Best regards

Quantum

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Re: Intro to the Community
« Reply #7 on: November 19, 2016, 07:49:54 PM »
Well, yes, for me it has been as clear as crystal for a long time - POIS causes me, among other things, a drastic and sudden change in personality, so social life and relationship have been a great challenge for me.  Well, now, in the last couple of years, with better control over my POIS symptoms and abstaining more often than not, I am more stable on the emotional side. Moreover, now that I am over 50, sexuality does not matter as much as before in my long time relationship, and my spouse definitively prefers to have me staying calm and kind, so she, like me, prefers to keep our sexual activities at a very low frequency - I think she had more than enough of the "anxious and exhausted madman" episodes !  And me too !  What's great for me, for us, is that she really loves who I am when I am not in POIS, so she had stayed with me all those years, despite my inexplicable emotional instability.  But now that I have gain some more control on my symptoms, she has adjusted her expectations the new situation, so she wouldn't accept the kind of full-blast POIS attack I used to have.  So we are very cautious not to awaken the POIS monster.

My 9 years of psychotherapy are for sure also a factor and my emotional stabilization process....   Yoga, meditation, regular exercise, and healthy diet, too.  I am attacking from every possible direction this multi-headed POIS monster !
« Last Edit: November 19, 2016, 07:59:22 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Dirkstar

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Re: Intro to the Community
« Reply #8 on: November 19, 2016, 10:21:11 PM »
A monster indeed. Many thanks.

demografx

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Re: Intro to the Community
« Reply #9 on: November 20, 2016, 12:40:30 AM »


I am attacking from every possible direction this multi-headed POIS monster !




This multi-headed POIS monster was recently spotted in Nova Scotia...but is moving quickly to wreak POIS havoc worldwide!

This particular POIS monster is the cognitive type.




« Last Edit: November 20, 2016, 07:14:59 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Dirkstar

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Re: Intro to the Community
« Reply #10 on: November 20, 2016, 12:44:21 AM »
Awesome! lol

Quantum

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Re: Intro to the Community
« Reply #11 on: November 20, 2016, 12:03:46 PM »
Great, Demo !  It looks like POIS for sure  ! 


hehehe....   ;)
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Intro to the Community
« Reply #12 on: November 20, 2016, 04:07:10 PM »
Thanks to the anonymous POISer from Nova Scotia for submitting the above video clip! The biggest news since the Roswell UFO!





« Last Edit: November 21, 2016, 01:41:46 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Intro to the Community
« Reply #13 on: November 21, 2016, 12:15:57 AM »

Thank you to the creators...of this forum.


On behalf of Daveman & myself,


10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business