[demografx]

The last paragraph sounds exaggerated, unless I missed a lot of action. 

Which number(s) are exaggerated? Hmm, If it's the very last paragraph, maybe you're right. Thank you very much for bringing that up, I'll re-consider it on the next letter, maybe stop at "this could save lives" (we have had extremely distraught people here). And we have had some empathy expressed from researchers, but I do see what you're saying, Looking_for, so thanks again!

I'm gonna try to find whats wrong with me without waiting for [proposals, clinical trials, etc.]

Absolutely agreed. That's what I and mostly everyone here has been doing for the last 3 years.

studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc.

NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.

We could end up [with] an endocrinologist who likes the idea and wants to investigate more about it. Its good to have a plan B, if my plan A fails.   

I thought I had a shot with my endocrinologist, who is senior medical staff and faculty at a major (multi-billion-dollar) medical research university and hospital complex. Alas, no go.

I think we're already on Plan Z []

[lauracostis]

Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.

[Looking_for_answer]

NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.

interesting. ill have to read that post. if its for a high quality study i bet we can find 30 person with 1000$. 1000$ is nothing for a high quality study..

[Looking_for_answer]

Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.

Vitex is OTC http://www.iherb.com/Chaste-Berry-Vitex [nofollow]
Cabergoline (dostinex) not OTC but one of those substance that people get without a script all the time. There is always online pharmacies in Mexico, India, etc that sell the same products, for cheaper, with no Rx. I used some before, never saw any quality issues. I think the same goes for bromo, but I think carbergoline might be more efficient at reducing prolactin.

besides that, your doctor's job is to get you back to health. If he doesnt know how, his job is to prescribe to you what you tell him. just look on pubmed, find a study that suits you, print it and show it to your doc and say this is what i want. if you know what u r talking about and present a study, he will feel more or less protected and will write you a script. else just change dr

edit: another route we could try (still to reduce prolactin) to see if it helps is to increase dopamine right from the start instead of just after orgasm as i had suggested. most likely less effective than the first plan, but still worth a try. l-tyrosine, niacin and P5P should help. l-DOPA (also OTC) even stronger

[RhythmSpring]

Has anyone ever tried Piracetam (a nootropic) for their POIS symptoms?

[Looking_for_answer]

would toco-8 be tocopherol aka vitamin E ?

Yes your right.

mister_z, your guess is as good as mine! Unless "anonymous sufferer" comes forward we won't know. But don't worry, mister_z, this is the first time in 2 years since the forum started that this type of anonymous posting has occurred.
 

Hi all,

I report back now after several months of no symptoms of POIS that I have fully cured my POIS by reimbalancing my hormone  and neurotransmitter levels.No more depression, mood swings, headaches/mirgraines/foggy brain/muscle and joints pain, exhaustion, inflammation of the eyes, stomach bloating, indigestion, diaheera, stomach pain & cold,flu like symptoms after an orgasm.

You can check in my last few posts that I said I was getting furthur hormone bloodwork,  saliva and urine neurotransmitter tests done and would take the action necessary to reach optimal hormone levels.

The short version :

Low total+Free/Bio testosterone levels
Low Cortisol & Dhea levels = Adrenal fatigue
Low-Mid range Thyroid (Free T3)
Very High prolactin levels
High Estriol+Estrone levels
High Progesterone levels
Low Dht levels

Very Low Serotonin levels
Very Low Gaba levels

I made a big mistake by going on testosterone cypionate shots but i was lucky I did not completely shut down my HPTA and desensitise my testes Lh signals as I was shooting HCG* E2D to keep the natural production of T from completely shutting down.

I then had to use HCG+HMG/FSH+Toco8 to fully restart natural t production to optimal levels as I did not want to stay on T shots for life.I found that by eating more red meats, eggs and in general more protein and less carbs helped with the restart.It was not a easy process though alot of ups and downs.

I burnt my adrenals out in my late teens by overtraining in boxing and mixing that with overdrinking spirits(straight bottles of vodka, brandy etc) and taking too many stimulants and partying with very little sleep for a few years.I didnt notice the adrenal fatigue till around age 21 in my trip to New York.

Iam using 6mg of Medrol, 5mg Dhea sublingual+15mg dhea cream, Maca, Pantothenic Acid and Vitamin C to heal my adrenals. I also had a period where I would sleep in for 10-12 hours and take naps often in the day.

The cortisol from the medrol is used from the body and that shuts down the bodies own production of cortisol which gives the adrenal glands time to recover.

After starting on Medrol for around 4-6 weeks, I then started
on Armour 1/2 grain and increased 1/4 to 1/2 grain every 2 weeks too 2 grains.

I understand I will need to wean of both Medrol and Armour after 6-24 months depending on the individual.

I had very high prolactin levels which is the cause of crap libido and very slow refractory periods after an orgasm and also can cause headaches/migraines and an overall foggy, drained feeling.

I used Cabaser/Dostinex/Cabergoline(All same drug) to lower to 1/4 of the lower range which is perfect.Now I sometimes use the USP supplement Powerfull when I want to go more than once which has scientifically been proven to reduce prolactin levels and increase testosterone and dopamine levels.

I improved my good to bad estrogen ratio by taking calcium glutarate and Broccoli extract to lower the high estrone and estriol.

The very low serotonin and gaba levels which caused me anxiety, depression, mood swings and often in the past heart palpitations was cured easily by taking gaba and 5htp.

I had to drink a glass of orange juice everytime I took a 5htp tablet to make sure the 5htp would pass the brain barrier and also I found that gaba sublingually was more effective than standard oral tablets.

I was stumped on the high progesterone levels and low dht levels for a while. I looked everywhere on how to lower progesterone directly but the only sources I found proven to lower progesterone was to increase dht levels.

Luckily for me that by increasing my testosterone levels, some of the increased testosterone converted to dihydrotestosterone and then lowered my progesterone levels
 

I guess when you sort one thing out it will reach to the rest.

Once my DHT+Test levels were near the top of the range, E2 mid range and Prolactin was within 1/4 of the lower range this is when I feel my best for libido, overall physically feeling a hell of a lot stronger and very confident mentally.

I do still monitor my hormone levels every month or 2 as sometimes I get lazy with supplements and diet or I have a period of eating crap junk food .. lol

oh ... I solved my stomach bloating and indigestion by taking Hydrochloride Betaine, Q-Zyme Digestive Enzyeme blend and primal defense Ultra probiotic formula.

I recommend everyone to have their hormones and neurotransmitter checked either through their local gp/dr or through an independant lab, ZRT, Quest etc

Hormones:

Total+Free/Bio Test, LH+FSH, Estradiol(E2), SHBG, Prolactin, Cortisol(Saliva, morning, noon, evening, night), Dhea, IGF-1, Progetesterone, Dht, Free T3 (Free T4,TSH if possible),

You will know exactly what is wrong and there would be no more second guessing

Remember even if you have already had hormone tests done and your doctor says you are fine or normal. It usually isnt the case as they do go by ranges only and not age to range.For example :

A 70 year old male could have a Total testosterone level of

350 with ranges of 250-850

but a 21 yr old could have the same level yet most drs will say you are normal because you are within range.

The dont tell you that 250-350 test level is normal for a 70-80 yr old and the upper range 800+ is normal for a late teenager or early 20s. Obviously we feel the best when our t levels are higher than lower.

A good doc would do furthur tests like E2, Prolactin, Cortisol, Free T3, SHBG and others to check what is causing the low t levels even if it is within "range".

It happened to me and I let it go for years thinking there was nothing wrong with my hormone levels until I started to do my own research and studying many Anti Aging Specialists posts on the anabolic and metaphorsis forums.


I did all my tests at home even the blood tests (just a simple pr.ick of the finger) and did them the morning after an ejaculation. This way it showed me exactly what was going wrong in my body during the symptoms of POIS.

I kind of knew I had low testosterone as I had no drive for life, no libido and felt like sh1t in general and lost a ton of strength and muscle and gained alot of weight in fat.

I also guessed I had adrenal fatigue due to having no energy all day and night dispite sleeping 10-12 hours. I didnt want to speak to people and even had social anxiety due to the crap adrenal fatigue but the good thing is that I have it no more

I had no idea about the high prolactin, low DHT, high Progesterone, High estrone & Estriol(Bad estrogens) so it is best to get everything checked as much as possible.

hmmm ... i think thats all for now, any questions please fire away.

Michael




*HCG

Benefits of HCG supplementation:
1. Aesthetic maintenance of testicular size
2. Maintaining activity of testicular Leydig cells - promoting natural testosterone production - preventing primary hypogonadism
3. Improving sex drive greatly (perhaps more so than just with testosterone replacement

HCG acts like LH (Luteinizing Hormone).

LH has several actions, such as:
1. It stimulates testosterone production from the testes
2. It stimulates the production of aromatase enzyme
3. It stimulates the production of Cytochrome P450sc enzyme

Written by a Physician, Psychiatrist, Behavioral Neuroendocrinology, Immunology, and Nutrition = Psychiatry in Dr Romeo B. Mariano.

The above was taking from my posts made several months back.

**** this board logged me out im not rewriting my whole answer, anyway my basic point was good job buddy, your starting hormonal/neurotransmetters profile is very similar to mine right now and i think its probably the case for many people here. you took control, i love it.

If Michael still drops by, how are you now? can you remain well without medication or have you cured permanently? how was your pregnenolone before you start and now? what about your LDL/HDL cholesterol before and after?

the only thing i dont like with that procedure is that it brings you artificially back to an hypothalamic-pituitary-adrenal-gonadotropic axis equilibrium, and I fear that I will not stay at that equilibrium forever if i dont do more. i mean i think there is a reason why we were more prone to develop POIS, and its not genetic. so im trying to fix my hormonal/.. profile as you did, but only using orthomolecular medicine principles, change of diet, exercise, much of the right, high quality OTC supplements to rebalance all minerals, vitamins, amino acids, etc its so much work.  if that hasnt worked within a year or two ill go for the pharma route as you did. but fixing everything artificially is nearly impossible. for example i suspect my bad copper/zinc ratio to also make me prone to ADHD type symptoms. my iodine levels are too low, etc. i think fixing every single thing with medicines is probably possible, but not permanently (ie without some medecines for life).

btw for everyone reading this, pregnenolone is OTC if you want to try. some people claim it stimulate its own production, i dont know if its true
if i was gonna have an orgasm soon i would take vitex for a while before, to see if it helps, but for now i prefer abstinence
ill drop by in a month or so
i suggest we do a wiki page, say pois.pbworks.com where we could document what pathways were experimented with (and with what) in a wiki manner, formally, with links. etc  for for now its likely irrelevant to me cauz im gonna run the program i wrote above first. but i suppose i could modify it along the way if something great comes out of the wiki

[demografx]

NORD

On Jul 17, 2009, at 11:18 AM, Stefanie Putkowski wrote:


Hi [demo],
 
We do not know of an organization or individual who has the resources to research this specific condition.
 
However--one strong possibility would be for you (and others struggling with POIS) to form a formal patient organization dedicated to raising awareness and raising research funds for this debilitating disorder. As NORD's research program administrator, I can assure you that the researchers are there--they just don't have the funds.
 
NORD can provide guidance to you on forming a patient resource organization.  We have helped countless groups of people suffering from rare disorders to form patient organizations, many of which have taken off with fabulous success!  It can't be done by one person--you would need help from your fellow sufferers. It does not matter if they are overseas or across the USA--all you would need is the will to form a true patient resource group and the ability to use a computer.
 
NORD printed an article on raising funds for research, and published it in our Spring 2008 newsletter.  The three individuals/families who were at the heart of the article had no experience, whatsoever, in forming groups or fundraising.  I can send you that article if you'd like to read it, and you could feel free to forward it to your group.
 
That's just some food for thought--but it is very realistic, I can assure you from our experience here at NORD.
 

Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders

Join our online community
http://nord.clinicahealth.com/

NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

[demografx]

The idea above is for us to raise $30,000 by hosting neighborhood barbecues and the like. Difficult, I explained to Stefanie, since this is a sensitive subject, and not something we wish to broadcast about ourselves, e.g., "Come on over to our barbeque so we can ask you for money to help our problems with orgasm."

But I re-printed the email to show you that they are friendly to us. Much more than I can say than ANYONE or any other organization that we have contacted

[CertainlyPOIS]

i got results back for progesteorne it was .9ng/ml range <1.4ng/ml no starting range
and converted to nmol/l which equaled 2.862nmol/l
looking at dr.dexter's article the in range for progesterone
.7 - 4.3nmol/l.

[lauracostis]

my progesterone was high, i am going to do a bunch more tests on Friday.

[CertainlyPOIS]

my progesterone was high, i am going to do a bunch more tests on Friday.

could ldn affect your results..

[RhythmSpring]

Has anyone ever tried Piracetam (a nootropic) for POIS?

[omerbasket]

Hello to you all!
My name is Omer, I'm 21 year-old and I'm from Israel. Excuse me if I have some mistakes in English... It's not my primar language.
I have both fibromyalgia an Crohn's Disease, and they both started about 2.5 years ago. It was around that time (or perhaps just a few months later, not sure) that I started to feel more pain -  like my fibromyalgia pain, which is and all-over-the-body pain and itch - but more severely, after masturbating. Today I have absoulutely no doubt that the pain becomes more strong after masturbating. And also, my body is more itchy. About things such as concentration and fatigue - which are also common for people with fibromyalgia, wnd which I also feel - I can't tell for sure if they are worsening after masturbation.
Anyway, it's not a known fibromyalgia symptom (although this feels just like my fibromylagia physical symptoms - just more severe), I started seeing doctors for this just lately. I had only one experience with a drug prescribed to me in order to try and ease my pain: Seroxat (SSRI). The doctor told me to take it about 4 hours before masturbating. I also take, for my fibromyalgia, Cymbalta (SNRI), So at first I took those two drugs almost at the same hour. In the first few times I felt better than I used to feel after masturbating. But after those times, taking the drug had no effect on me (I think it was a time or two after having dissapointment with Seroxat that I stopped taking Cymbalta in the same hour, because usually I take it wround 19:00, and I thought it might have negative effects on my pain when I took it around 13:00 on one day, taking it about 19:00 on the other day). Anyway, as I said, it was after Seroxat begun not-to-work for me. Perhaps the effect of Seroxat was a placebo effect (and anyway, I still had pain after masturbating in those first few times, just a less sever pain than the usual post-masturbating pain), and perhaps the lighter pain in those times was just a coincedence.

Anyway, there are two tests I had in the past (not realted to this issue) that I'd like to share with you, see if you have any insights about them. The first was taken in february 2008:
1) TESTOSTERONE - TOTAL 12.5 nmol/L (usual numbers are 8.4-28.7)
2) FSH - 0.9IU/L (Which is a bit low, because as far as I know the normal is at least 1IU/L)
3) LH - 3.3IU/L (Which is normal, but close to being too low, as LH should be between 1 to 20 IU/L).

A test from September 2008:
1) FSH - 0.8IU/L (Again, low. By the way, this test as well as the one from febuary were taken in the morning).
2) DHEA SULPHATE - 4.42 (Normal, suppose to be between 2.17 to 15.2)
3) CORTISOL-BLOOD - 421nmol/L (Normal, suppose to be between 138nmol/L to 690 nmol/L).

I tell you this because I know one of the medications that did succeed for some of us is testosterone.

I also have my eye on dopamine, and a few days ago I was diagnosed as having adult ADD, so soon I'm suppose to start treatment with Ritalin LA or Concerta - and if I'm not mistaken, they sholuld elevate my dopamine levels, at least temprorarily, so I shell see if that would make me feel better also after orgasm.

[CertainlyPOIS]

on sudden hike of prolactin being the problem.
demographx used to use adderall - which is a potent dopamine stimulator, and he sill has symptoms. This suggest prolactin is not the problem since dopamine and antagonist of prolactin.

[CertainlyPOIS]

Has anyone ever tried Piracetam (a nootropic) for POIS?

no, but it seems has powerfull as using cerebrolysin. Do you think it is something almost all neurologist will know about.

[daveman]

The semen would literally pour out when no contractions (orgasm) occur,
quite odd to watch!
I still could keep going (erection) and feel fairly energetic.

In terms of POIS, this had no severe effects anymore than if I had not ejaculated (some tiredness but simply being turned on had always previously caused some pois anyway).
It was the contractions of the orgasms that caused the real fatigue problems.

I'm still confused about which way around is which, but in my experience, for me, ejaculation with minimal contractions makes me feel a lot worse than if I exagerate the contrations. Don't have a clue as to why, but alas....

[lauracostis]

Has anyone ever tried Piracetam (a nootropic) for POIS?

no, but it seems has powerfull as using cerebrolysin. Do you think it is something almost all neurologist will know about.

Piracetam looks like it might be interesting to try, it looks like it is an otc supplement in the united states, and helps get oxygen to the brain.  cerebrolysin is considered the best nootropic medication .  i have a prescription for modafinil(provigil) which is a prescription nootropic, they give it to astronauts now instead of amphetamines.

here is some good info about nootropics that are otc supplements
http://www.imminst.org/forum/index.php?showtopic=36691&st=0&start=0

[lauracostis]

my progesterone was high, i am going to do a bunch more tests on Friday.

could ldn affect your results..

its possible, i dont have any progesterone tests before i started ldn,so i cant really say.  i dont know of any physiological affects that ldn would have on progesterone.

[demografx]

Piracetam and other "smart drugs"
'A friendly word of caution'

http://www.deuceofclubs.com/write/drugs.htm

[demografx]

Oxygen Bars

I have recently become intrigued with the postings here on oxygen, so I've been looking for an "oxygen bar", a place where you can walk in, sit down and order a drink...er, I mean...some oxygen.

So far, most "oxygen bars" seem to be places that sell the equipment, though.

               

                          POIS Bar & Grill???