[hurray]

so my grandfather had Alzheimers stage 2 almost to stage 3.

anyone else here with POIS have a parent or grandparent with Alzheimers as well?

im considering corresponding with some Alzheimers researchers in hopes that they find some interest in the similarity of the effects of my POIS and Alzheimers.

You may be onto something, Defsync. My Grandfather died of Alzheimers. I was researching it a while ago, and came across some research stating that even in normal people, dopamine levels drop by an average of 10% every decade. The conclusion was that if humans lived long enough, EVERYBODY would get Alzheimers eventually. People with Alzheimers are experiencing the dopamine dropping at a higher rate, so it is diagnosed within their lifetimes.

[jferr]

Hey guys. My name is Jon. I have been posting on the other POIS Forum for quite some time but this is my first post on here. Its great that we are making progress ! Seems like every few months we are coming up with an upgrade for treatment and learning more about our problem. Let me tell you a little about myself. I apologize in advance for the length.

My problem started suddenly at orgasm one day when I was about 16, and the symptoms have not since lifted in my 8 years even going months without activity. What may make my issue different than most is it is constant, but still sexually derived. My initial symptoms were mental everything seemed dull and colorless. Ontop of the initial problem I developed my POIS. So in the days after sex I would become even worse than my initial symptoms. I'm 24 now and my problem has gotten to the point where cognitively I can't do the simplest of things, I have low libido year round, cant work or go to school. Everything is disoriented and im extremely mentally absent. The physical symptoms are all there as well.

I thought it was hell until I developed my latest and most debilitating symptom about a year ago.. A weird paranoia around people and even when I'm alone. It doesnt feel like a schiz-type thing but more like Im lacking the chemicals that allow us to deal with things during the day and that allows us to face things. The discomfort is unexplainable its like I'm on automatic defense mode all day 24/7..Worse than fight or flight. I'm thinking maybe norepinephrine area but who knows. All I know is its hell and if any of you are also dealing with this please let me know.

Like many of you ive seen tons of doctors, had tons of tests and exams from ultrasounds on my testicles to blood work for lyme disease. Everything. Every kind of doctor.  Any progress I have made has been on my own and I am thankful to many of you for that (Niacin and other discoveries). I am currently seeing a psychologist that believes in my problem and is open to letting me try and medication I want to try and patch things up while we continue to move forward. If anybody is knowledgable to can give info to medications please let me know. i will be seeing my doctor tomorrow, Do not know what to request.

I will tell you all that i tried adderall, celexa, focaline, and xanax and none had any positive effects. Niacin is the only thing that has given me a decent level of relief when taken an hour or so before sex. I will continue to take it for now.

My family does have a very successful family business, and when I am able to recover enough to work and produce I will be donating to help the good cause along. But as of right now I'm kinda lost and hoping as many of you are.

Thank you all for your time. We will conquer this !

Jon.

[demografx]

jferr, welcome to the POIS thread of The Naked Science Forum!




**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain!)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here at the Naked Science Forum -- "daveman".  He'll reply to you.


Here are some POIS resources which may be helpful to you:

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the YouTube file for the POIS  TV documentary, "Desperate Measures":

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

   
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

It can be very  helpful to you when dealing with medical professionals to point out the POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research:
http://rarediseases.info.nih.gov/RareDiseaseList.aspx?StartsWith=P, then scroll down until you reach Postorgasmic illness syndrome. 

POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus nearly 1,500,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

jferr, you asked for recommended medications. A full range of hormonal testing with an endocrinologist led to my 80% POIS cure with testosterone replacement therapy. Ask your doctor about hormonal testing (via bloodwork).

[jferr]

Thank you, demografx, for your responses. Great work on this site, I have been an active member of the new forum for almost a year now and I see that this forum also has tons of great information and members.

Regaurding the hormonal testing, I've had almost everything possible tested and the results have been normal other than high IGF-1. Also low iron, and high cortisol from time to time. The numbers are not outstanding or anything so it is frustrating that I,  Like man, have not had something come up in blood work results.

[demografx]

Regarding the hormonal testing, I've had almost everything possible tested..."

I did, too. But everything changed when I worked with a POIS-sympathetic endocrinologist, and he did far more sophisticated testing than I had previously done with GP's and urologists. Reversed 30+ years of my POIS agony.

[jferr]

Wow, If only I could find one of those. I've seen more than a few, pitched it right and everything. Even offered a reward or two, None of them were accepting of it.. I'm happy for you man thats awesome.

[jferr]

May I ask what type of testing you did and what you tested ? I would love to give that testing information to my doctor if you don't mind. It would be great to make some kind of progress.

[kurtosis]

jferr, you asked for recommended medications. A full range of hormonal testing with an endocrinologist led to my 80% POIS cure with testosterone replacement therapy. Ask your doctor about hormonal testing (via bloodwork).

What exactly is your testosterone replacement therapy? Gels & injections?

[jferr]

Kurtosis, Thank you for your response..

I had my testosterone tested both before and after and free testosterone was low but barely. They told me my testosterone balance was normal.

[GoingCrazy]

jferr, I can relate to what you said about being paranoid around people.  I guess you can call this social anxiety.  I believe it is probably some guilt-type reaction that your subconscious sets off after orgasm.  Sort of like you sense that people know what you did.  I usually get this after having orgasmed, especially to porn.  That is why I try to stay away from porn.  I don't really get the effects if i just masturbate without any material.  You don't have to look at porn to masturbate, but you can masturbate without looking at porn.  If i do get this feeling,I will have the anxious feeling for that day and maybe the next, the day after that it goes away.  After discovering Niacin I am a lot better too, but I also make the mistake of taking niacin after O because I really do not plan my orgasms.

[demografx]

Wow, If only I could find one of those [POIS-empathetic endocrinologists]. I've seen more than a few, pitched it right and everything. Even offered a reward or two, None of them were accepting of it.. I'm happy for you man thats awesome.

Thank you, jferr!

1. I went to a major university medical center. There you will find RESEARCH-endocrinologists (they teach). POIS is more or less at a "research" stage, so the fit is better.

2. I found an educator-practitioner. Another way of saying he's older, has TENURE, therefore is more secure with exploring something "unorthodox" (not in any standard diagnostic medical manual)...like POIS.

3. I went along with a diagnosis of "hypogonadism", rather than "POIS". Using "POIS" on laboratory forms would set off alarms.

4. I now have a good medical team. But in earlier years, I found that "nice" didn't work. So I got MILDLY AGRESSIVE AND OBNOXIOUS. I FIRED DOCTORS. I GOT YELLED AT.  This worked. But it's not for the faint of heart.

5. It helped my case by bringing POIS research papers to my first meeting, and pointing out - to my new endocrinologist - that the 2002 (and now 2011) POIS medical research studies/papers were co-authored by an ENDOCRINOLOGIST (Dr Dave Schwartz, Netherlands).

Keep in mind that when it comes to physicians and POIS, if you have read these forums even superficially, YOU KNOW MORE THAN THEY DO!! YOU ARE THE EXPERT, NOT THEM. SO DON'T ALLOW YOURSELF TO BE INTIMIDATED BY DUNNO-POIS-PHYSICIANS!!

May I ask what type of testing you did and what you tested ? I would love to give that testing information to my doctor if you don't mind. It would be great to make some kind of progress.

I posted about this in much detail here at the forum since 2009. Could I ask you to kindly do some Google searches for it? I will try to do the same if I have time. I tested for: SHBG, free T, bioavailable T, total T, FSH, prolactin, and much more.

jferr, you asked for recommended medications. A full range of hormonal testing with an endocrinologist led to my 80% POIS cure with testosterone replacement therapy. Ask your doctor about hormonal testing (via bloodwork).

What exactly is your testosterone replacement therapy? Gels & injections?

Patches. 3 Daily. Watson Pharma's Androderm product, 15mg total (3 patches @ 5mg each patch).

Endocrinologist recommended 10mg, eventually I asked to try 15mg, he approved, it's been an amazing, miraculous reversal of 30+ years of POIS horror.

Ritalin, caffeine, Levitra + other unknown factors sometimes bring me astonishingly to  100% POIS-free. (Yes, I'm still amazed 2+ years later!)

But I am NOT sure who this will work for and who it will not. But several members here have found relief with TRT.

[demografx]

Kurtosis, Thank you for your response..

I had my testosterone tested both before and after and free testosterone was low but barely. They told me my testosterone balance was normal.

My testing showed "normal" too, until I did mine at large university medical lab with a top endocrinologist.

I also asked for MORE (50% more) testosterone than "standard" treatment. It made a nice further dent in my POIS.

But this is just my story. Until we do formal POIS medical research, you will need to unfortunately ***experiment*** to find out what works for you.

The more I studied this forum in 2007-2008 and listened to hormonal TESTING recommendations, it led to my 80% to 90% cure.

[kurtosis]

Kurtosis, Thank you for your response..

I had my testosterone tested both before and after and free testosterone was low but barely. They told me my testosterone balance was normal.

My testing showed "normal" too, until I did mine at large university medical lab with a top endocrinologist.

I also asked for MORE (50% more) testosterone than "standard" treatment. It made a nice further dent in my POIS.

But this is just my story. Until we do formal POIS medical research, you will need to unfortunately ***experiment*** to find out what works for you.

The more I studied this forum in 2007-2008 and listened to hormonal TESTING recommendations, it led to my 80% to 90% cure.

That's interesting as the ZMA supplement is supposed to boost testosterone levels and I find that other activities that are supposed to boost testosterone production, such as lifting weights, also reduce the symptoms. It always struck me as odd as boosting testosterone makes me more inclined to want to have an O but then seems to reduce the effects of one. But what worried me about that was adrenal fatigue. Eventually, the aggressive exercise regime made me feel burnt out.

Have you ever had tests for vitamin and mineral deficiencies. Hair analysis for example?

[martin88]

so my grandfather had Alzheimers stage 2 almost to stage 3.
anyone else here with POIS have a parent or grandparent with Alzheimers as well?
im considering corresponding with some Alzheimers researchers in hopes that they find some interest in the similarity of the effects of my POIS and Alzheimers.

My grandmother died from Alzheimer.
A possible similarity: glucose utilization in the brain:
http://www.sciencedaily.com/releases/2011/03/110328161854.htm

Ritalin, caffeine, Levitra + other unknown factors sometimes bring me astonishingly to  100% POIS-free. (Yes, I'm still amazed 2+ years later!)
But I am NOT sure who this will work for and who it will not. But several members here have found relief with TRT.

Recently I have read a study saying that testosterone can increase the response to noradrenaline reuptake inhibitors antidepressants.
Maybe that's why it didn't work the same for everyone.
http://www.ncbi.nlm.nih.gov/pubmed/15301926

Kurtosis, from what I know it has never been proved that ZMA is increasing testosterone, but maybe it's true for people who have a zinc deficiency.

[kurtosis]

Kurtosis, from what I know it has never been proved that ZMA is increasing testosterone, but maybe it's true for people who have a zinc deficiency.

Very interesting Martin. I don't buy the SNAC study (in case anyone thinks I'm suggesting otherwise but the ingredients of ZMA are important in the production of seminal fluid so I thought this may be having a replenishing effect. For me, it's just a convenient alternative to separate zinc, magnesium and zinc supplementation & I tend to buy the bulk stuff rather than the SNAC-approved, branded and wildly expensive products.

The other thing is that studies of testosterone production in athletes who are already taking amino acid cocktails and engaging in aggressive weight training are not necessarily representative of the general population so I'd be inclined to regard pro/contra ZMA efficacy for testosterone increase as something that's not conclusively decided yet and may have other factors (e.g. vitamin & mineral deficiencies, degree of free testosterone before supplementation starts, other supplementation programme etc.). For example in older weight trainers, I've seen studies that suggests they can boost testosterone levels by actually reducing protein supplementation.
See http://www.sciencedirect.com/science/article/pii/S0960076008000782

I've had 2 relatives on my father's side of the family who have developed alzheimers by the way so add that to the list. Perhaps there's a connection. I read a fascinating paper recently on experimental alzheimer treatment using medium chain triglycerides, found in coconut oil, milk, colostrum etc. The idea is that ketosis can work around the impairment to glucose utilisation in mitochondria by providing an alternative fuel source.

[Defsync]

POISers who had parents/grandparents/close family members with Alzheimers:

Kurtosis
martin88
hurray
Defsync

Is there anyone else? This is enough for me to contact an Alzheimers research center at Harvard about this "coincidence" in hopes that some correlation may bring insight to either condition.

[Defsync]

I just spoke on the phone with the center at Harvard.

http://alzheimersweekly.com/content/alzheimers-disease-research-center-harvard-medical-school

They want me to put together an email describing the correlation between POIS, relatives who have Alzheimers, and the similarity in mental symptoms one gets from POIS to the symptoms one gets from Alzheimers.

This is who I am to send the email to:

http://madrc.mgh.harvard.edu/liang-yap-phd


So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

[jferr]

demografx, I too, learned a long time ago not to be too 'nice'. I'm 24 now but from 16 or so up until about 20 I was forced out of many offices. I then got too aggressive for my own good. Finally a couple of years ago I learned how to approach doctors in the right now, Being aggressive when need be. I was able to convince my doctor to do a full range of testing of everything including complete thyroid, prolactin, progesterone, free T, and catecholamines.

If the sophisticated testing you did includes things I somehow haven't tested for it would be greatly appreciated to get a list of the items to present to my doctor, If you wouldn't mind.

I have consistently been weight training since about 18 or 19 years old. Not only because I like to play sports but because it helps my situation. I've only taken a few weeks off in about 6 years because I feel worse without it. I do wonder if it affects my testing levels..

jferr, I can relate to what you said about being paranoid around people.  I guess you can call this social anxiety.  I believe it is probably some guilt-type reaction that your subconscious sets off after orgasm.  Sort of like you sense that people know what you did.  I usually get this after having orgasmed, especially to porn.  That is why I try to stay away from porn.  I don't really get the effects if i just masturbate without any material.  You don't have to look at porn to masturbate, but you can masturbate without looking at porn.  If i do get this feeling,I will have the anxious feeling for that day and maybe the next, the day after that it goes away.  After discovering Niacin I am a lot better too, but I also make the mistake of taking niacin after O because I really do not plan my orgasms.

GoingCrazy, thank you for your response..

My paranoia is part of my constant symptoms.. I explained my issue as best I could a few posts above. I understand what your saying and I'm glad you've conquered it, but my paranoia is not a guilt thing or anything like that. Its really unexplained and I suspect its from a lack of certain neurotransmitters resulting from this problem. My symptoms have been constant with a POIS on top of them making them worse for a few days and the paranoia jumped on the train about  ayear ago after trouble thinking, slurred words, confusion, dulled emotions, fog, and physical symptoms such as short breath, pains, sluggish, and fatigue. These things are always present for me. I am thinking the paranoia has something to do with somewhere in the dopamine or norepinephrine range but I really don't know where to start.

The Niacin has made me a little more alert and has helped everything including the paranoia but not nearly enough. I have been able to think enough for small talk but nothing more than that, but it has given me more energy. I've just recently ordered a bunch of supplements like vma and such to experiment with them. I can only experiment once every couple of weeks because thats how bad my POIS affects me, I always recover different but never fully.

I am also currently seeing a neuropsychiatrist that I may ask for Wellbutrin or Strattera, I tried celexa and it did nothing for me but dull me even further. Everything has felt like an engine 'turn off' from day one so I've always felt like I needed some type of core stimulant, I dont know if that makes sense to those reading this.

Regaurdless, progress is being made. Less than a year ago we found fenugreek and now we are past niacin looking for something better. We will beat this.

Thanks guys,

Jon.

[badgerstripe]

I just spoke on the phone with the center at Harvard.

http://alzheimersweekly.com/content/alzheimers-disease-research-center-harvard-medical-school

They want me to put together an email describing the correlation between POIS, relatives who have Alzheimers, and the similarity in mental symptoms one gets from POIS to the symptoms one gets from Alzheimers.

This is who I am to send the email to:

http://madrc.mgh.harvard.edu/liang-yap-phd


So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

My paternal grandfather and his daughter, my auntie, had Alzheimers in the couple of years before their deaths, they were both in their 80s. My father died at 57, an age before which Alzheimers is less likely to develop.