[GoingCrazy]

I believe some of you may have discussed this before like a bad response to sugar during POIS.  I remember having that to a point where the only thing that didn't cause that was drinking water.  I used to drink Iced Tea all the time but quit that because it would put me in such a bad mood.  Anything really that I had to eat seemed to affect me as if it was not being "filtered" and just being put into my body.  It is getting a lot better now.  I was just wondering if any of you guys had it to my extent.

[demografx]

DEAN, no apologies needed. You're doing great, simply interacting here! This might not be my business, but I see enough urgency that you should push for the doctor visit! If nothing else, make sure it's ok for you to try fenugreek or relora. Especially if you're depressed or anxious. Dean, you might have to take charge more than you were prepared for. Your physical, emotional, psychological health lies in the balance. We have ALL had to overcome similar obstacles with people who simply don't get it. You can point to HUNDREDS who suffer like you and point to a medical paper written on POIS.

Best wishes, Dean!

[Dean93]

Feeling a lot better this morning. Random? Yes. Welcome? Unquestionably. Thank you Demo and John, I would like to go to the doctor but I don't really know how to tell my mom. It's not off the  list but hopefully I can try fenugreek and/or relora and not have to go through the whole thing of going to the doctor. All the research that I've done on the two says that they are safe. Demo, how do I know if they're unsafe for me?

Thanks for the tip CCconfucious.

goingcrazy, I don't really know if sugar worsens my symptoms. If it does I really haven't recognized it. Eating a lot of sugar does make me feel bad in general though.

[Guthrie]

Thank you Demo and John, I would like to go to the doctor but I don't really know how to tell my mom.

Dean, I realize it could feel embarrassing to tell your mom, especially if it involves talking about masturbation.  However, perhaps one approach could be to just tell her about it in terms of NE's--that way it remains in the realm of the involuntary, and it doesn't require describing anything that "you do yourself."  And, alongside that, you could give her a copy of the Waldinger article.  Then, you could say more to the doctor by yourself once you get there.

[demografx]

DEAN, if you take any other medicines, your pharmacy can tell you if there are any harmful interaction effects with relora. With fenugreek, just be careful and research it some more, and start small. I think I saw some unpleasant side effects reported here.

[demografx]

Dean, as Guthrie says about showing the Waldinger study, send me a private message with your regular email, and I'll send it to your regular email address.

[demografx]

Dean, thanks for requesting the Waldinger study!

[demografx]

GC, I think there has been a lot of mention regarding gastrointestinal disturbances afterwards.

[demografx]

Yet another Day Zero and feeling 95%! Slightly better I think because this time, I allowed 4 days' distance from the last Day Zero, instead of 2 days.

[Jdubs]

Please help me Demografx.

[Jdubs]

It won't let me post long messages

[Jdubs]

I need Dr. Waldinger's info bad. Please PM it to me.. with his case studies.

[Jdubs]

Hi, I've PM'd multiple people and tried posted multiple times on this forum in the POIS thread, but everything seems to error. I hope this topic actually shows up.

I don't know what's wrong, but I hope someone will send my message to Demografx ( I need the Waldinger case study from him ASAP), or willl transfer this in the POIS thread, as my multiple attempts with different computers wouldn't do anything for me.

Anyways, here's the message I intended to post in the POIS thread, in response to Demografx talking about Dr. Waldinger.

Hi Demografx,

First off, I'd like to thank you for the never-ending efforts you put into this forum and people with POIS.

I'm a 18 year old male student attending high school.. and I've recently come to realize that ever since I hit puberty, I've actually not been feeling what everyone else feels after emission. I've recently been accepted to a top university in California, but shortly after became depressed when I found out that I had the disadvantage of POIS that the other upcoming students in college will not have. I guess I've had it since a bit after puberty, but haven't really realized that nobody else in my classes feel the same way I do after emissions.

Anyway, I'll get to the nit-witty info later. I'm mainly posting here to get info about the Dr. Waldinger study of POIS. Hopefully I'll be able to use it to both motivate me and prove to people that what I feel is real. The only person I've been able to talk to is my art teacher, and I hope to dear God that I can tell my parents.

I PM'd you multiple times, but it doesn't seem to get through. If you could just e-mail me the info of Waldinger's case study, I'd give a thousand thanks.

Thanks for any help, and I hope you see this and reply as soon as possible. Again, I thank you for any info you can send me to back me up.

-JasonD

[demografx]

Hi Jason, your PM came thru fine. I think that typing an email address can be a problem in PM, so use AT instead of @. Also to be safe try dotcom instead of .com

I understand how desperate things get. Most of us do. I think there's an excellent chance for you to find  successful treatment. I hope you can find an understanding doctor. Some of us feel that an endocrinologist is best for us. One can be found by referral by your physician.

Keep in mind that none of us here are doctors. We are here to help each other by sharing our experiences, theories and treatments or experiments.

Tell us more about yourself. I have some ideas, but the "collective mind" of this forum is where the real power lies.

Best wishes and welcome to the group!

[Counterpoints]

...but shortly after became depressed when I found out that I had the disadvantage of POIS that the other upcoming students in college will not have....

I have felt this way sometimes.  But remember, many college students have disabilities -- diabetes, ADD, thyroid, etc.  You just have to work through it.  Don't half-ass your way through because you feel righteously angry about your situation. In the words of Yoda, "do or do not, there is no try". And I don't think giving up is ever in someone's best interests.

Also, remember that the Waldinger paper only discusses 2 patients, versus the approximately 300 people who have been discovered through this forum.  It is quite likely that Waldinger's paper does not very accurately describe your condition, because his characterization is based on very little data.  There is far more information in this thread, and in the survey, and even in the wikipedia article, than in Waldinger's paper.  Nevertheless, the Waldinger paper is definitely useful to draw attention to the problem.

And, to everyone reading, I would not expect miracles from visiting a physician.  I think seeing physicians and endocrinologists is the right thing to do (e.g. it has really helped demografx), but you can't expect the first doctor, or even the second, third, fourth, or fifth doctor to be very helpful.  This is a hard problem, and many physicians do not want the responsibility of trying to figure it out.  Your best bet, in my opinion, is to see a research endocrinologist, who has a university affiliation.  In other words, a doctor who not only does clinical practice, but who also writes research papers.  This is NOT a known condition, so some experimentation will need to be done.  Beforehand, I would try to understand the endocrine concerns that have been raised here: prolactin, cortisol, testosterone, pituitary issues, adrenal issues, thyroid etc.

[demografx]

Counterpoints, excellent suggestion about a research endocrinologist. I'll put that in future greetings to newcomers.

Maybe one reason for my success is that I am working with a major university medical center's endocrinologist, who is also a full tenured professor with 30 years experience. And his colleague is in charge of major grant research projects. The university environment is perhaps more conducive to "new" things, like POIS.

And thanks, CP, for strengthening my private messages about the limitations of Waldinger's study. Others need to hear that as well.

Again, the primary way I see Waldinger's paper's usefulness is to establish medical credibility about POIS when we show it to family, friends or doctors. It certainly helped me with my endocrinologist (the co-author of the Waldinger study is an endocrinologist, which my endocrinologist was happy to learn).

[demografx]

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




The consensus at this forum to heal your POIS, is to start with hormonal bloodtesting, preferably with a research endocrinologist. Your primary care physician can refer you to one.
 
Here are some POIS forum resources which may be helpful to you:

Please see "B_Jim"'s POIS Forum 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:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/


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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community.

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 250,000 page visits. Not bad for a rare malady!

[demografx]

you can't expect the first doctor, or even the second, third, fourth, or fifth doctor to be very helpful.

I'm much more optimistic! I would agree with you in my case and maybe yours, in the past.

But I think that today, and going forward, we have accumulated much more data on POIS, and terrific support from many other sufferers, especially on this forum.

Also, in considering the usefulness of doctors for us today, I'm including the new sufferer's testing of experiments and treatments of others that have been reported, some successfully, such as fenugreek and relora (I think they should be brought to a doctor's attention, especially for the younger people). Add to that the testing of some of the other theories here, e.g., oxytocin, nitric oxide, Levitra, etc. There are some treatments that would need to be monitored most carefully by physicians, since they're potentially dangerous.

But, more and more, we have reason to hope for POIS treatment  success, and much more quickly than ever before, building on others' previous experiments and successes.

For example, I don't believe that I'm the only POIS sufferer in the world who will ever find relief by (1) seeing an endocrinologist, (2) testing standard hormones accurately, and (3) getting POIS relief with testosterone replacement therapy. And, in this example, there's no reason to not expect this to go smoothly and quickly for a new POIS sufferer with a case similar to mine...qualifiedly, in some cases.

But it certainly won't take 30+ years' life-wasting despair and agony like it did for me!

Part of my optimism is based on the POIS sufferer being proactive by becoming a committed student of POIS knowledge and history and to not take BS from a lazy physician. Perhaps even to take the lead with a physician in a cooperative manner. An opposite, passive approach might very well lead nowhere.

I agree that we should not expect miracles, but to say "you can't expect [even] the...5th doctor to be very helpful" is - just in my opinion, today - very discouraging and not really accurate. I do, however, respect your words of caution: it can be devastating to have our hopes raised and then to be let down and not gently. And repeatedly.

It will be different for everyone, I suspect. Call me Mr. Pollyanna []

[demografx]

B_Jim, my creatinine was tested high. Since it is produced in the pancreas, I wonder if that relates at all to your theory?

[John21 (OP)]

Update
I have tried Relora in small amounts recently to test my tolerance for it, and it gave me a glimmer of hope. (I tried it previously but it affected me too much and I felt like I was drugged.) Last weekend I had an NE and I took the ¼ amount that I was experimenting with, along with my garlic. I took the Relora the day before and the day after, about 60mg each. (It was in a 250mg capsule so I divided up the powder and consumed it with some water.) I had no symptoms, but the really surprising thing was that I had the best sleep I have had in a long time the following night. Whereas I usually wake early and have a disturbed sleep thereafter that night was perfect. This could be a coincidence, but considering the success others here have had with Relora it may be responsible. The odd thing is that it is now over a week later and I am experiencing the “burnt out” phase that I would typically get with my POIS. For me Phase A was the deep cognitive problems (worst phase) that lasted for up to a week followed by this burnt out feeling, Phase B.  This time I experienced the B but no A.