[demografx]

I have an appointment with Dr Goldmeier in about 6 weeks time.

Wonderful!

Please remind Dr. Goldmeier that he is a valued friend of this Forum!

Demo

[demografx]

http://poiscenter.com/forums/index.php?topic=316.0

CAN YOU PLEASE COME OVER TO THIS SECTION TO SHARE HOW MANY YEARS YOU HAVE LOST AND WHAT YOU HAVE LOST IN THOSE YEARS AND HOW THOSE YEARS COULD HAVE GONE BETTER. 
COULD BE A GREAT STARTING POINT FOR REDDIT.

I replied.

Great thread, CC!

[demografx]

Hello All,

I’ve read some of Demo’s and Daveman’s posts about the current survey that they’re asking everyone to fill out.  I was interested in what this survey consisted of, so Daveman shared a link to it, just so that I could see it.

I now understand the importance of this initial survey, and why each of you really will benefit by completing it. 

FYI, it consists of 21 very brief, general questions about the POIS experience, and should take no more than 10-15 minutes – at the most – to complete. All you need to do is check off the answers as they apply to you.

Daveman has taken great care to assure anonymity in this survey. Only your screen name, a password (to access the survey) and the email address that you provided when registering for the forums are required.

This initial, general survey will foster more specific surveys as time goes by. For example, Daveman is working on one specific to niacin usage right now. I'm under the impression that a very reputable researcher has expressed some interest in this!!!

These upcoming surveys – which will likely each be brief -- will connect data about POIS in an orderly, organized fashion.  The importance of this is MAJOR -- there  is no other repository of data on POIS – anywhere! 

Between the NSF and SMF forums, there is a ton of information about POIS.  But it needs to be organized. 

Researchers won’t be able to use your POIS data unless it’s organized and highly coherent. (The hope is that they will be able to formulate scientific data for POIS, based on your data. I think this is Daveman’s main point in asking you to complete these surveys). 

And -- YOU will be able to put some of the pieces of the POIS puzzle together more easily for yourselves.

It is definitely worth filling out this initial survey -- even for those of you who generally don’t post, have never posted, or are extremely private about the POIS experience. 

I needed some clarification about some of the questions, and Daveman did answer my questions.  Basically, for the few questions that ask you to rate a specific statement on a "1 – 5" basis – you need to check off each of the specific replies – even if they don’t apply to you.  You’ll understand this when you fill out the survey!

As far as a time/effort commitment from each of you – you’ll just be checking off boxes.


FYI -- I will never be privy to your responses.  Just letting you know! :-)

So go do it! It really will be a gift to all of you. AND IT'S CONFIDENTIAL!!

http://poiscenter.com/forums/index.php?topic=299.0

(Also posted on SMF)

Thank you, Stefanie!

[kurtosis]

http://poiscenter.com/forums/index.php?topic=316.0

CAN YOU PLEASE COME OVER TO THIS SECTION TO SHARE HOW MANY YEARS YOU HAVE LOST AND WHAT YOU HAVE LOST IN THOSE YEARS AND HOW THOSE YEARS COULD HAVE GONE BETTER. 
COULD BE A GREAT STARTING POINT FOR REDDIT.

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had.  Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway .  In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. I think I'm turning it around as I've said a few times through supplementation. Things are definitely improving but when you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march

[Quasar]

I have just completed the survey! Hope it helps.

[daveman]

Yes, it will, thanks Quasar. This is just the first basic survey.

From here we find which remedies work for others and which don't.
We'll be able to see if the one it worked for is in a group like yours.
We'll be able to fine tune the dosages and timing,
we'll be able to see where things don't work,
why they work on some and why they don't with others.

And hopefully once we SEE better, we'll start to get clearer ideas about where to go next.

Certainly it will give a clearer path for the researchers-

[demografx]

kurtosis, that was very moving, thank you.

[Green]

http://poiscenter.com/forums/index.php?topic=316.0

CAN YOU PLEASE COME OVER TO THIS SECTION TO SHARE HOW MANY YEARS YOU HAVE LOST AND WHAT YOU HAVE LOST IN THOSE YEARS AND HOW THOSE YEARS COULD HAVE GONE BETTER. 
COULD BE A GREAT STARTING POINT FOR REDDIT.

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had.  Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway .  In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. I think I'm turning it around as I've said a few times through supplementation. Things are definitely improving but when you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march

Similar situation, exactly the same in the earlier years, it was only possible to achieve anything with total abstinence. I've been a bum for the past few years, whilst my younger brother who also doesn't have POIS has manage to successfully read a double degree. It's tough psychologically either way

[kurtosis]

http://poiscenter.com/forums/index.php?topic=316.0

CAN YOU PLEASE COME OVER TO THIS SECTION TO SHARE HOW MANY YEARS YOU HAVE LOST AND WHAT YOU HAVE LOST IN THOSE YEARS AND HOW THOSE YEARS COULD HAVE GONE BETTER. 
COULD BE A GREAT STARTING POINT FOR REDDIT.

I look at it this way. POIS took far too many years of my life. I made no progress for about 10 years, following the completion of a graduate degree. Anything I achieved before that was based on near total abstinence. That's really difficult to maintain in college and shows the kind of iron willpower I had.  Then I fell off the wagon and I've been in a relationship for many years which has made abstinence impossible (and it was never terribly desirable anyway .  In that time my brother who doesn't have POIS and started out with about equal intelligence based on IQ tests at the start of puberty (we both scored over 150) learned 3 languages and got 2 masters degrees. It's not that POIS has made me stupid but it's taken away the point of trying to learn new things as I've known that 1) I would forget the material quickly 2) I'm too tired to apply most of it. So I have a constant reminder of the effects of POIS on my life. I think I'm turning it around as I've said a few times through supplementation. Things are definitely improving but when you put a lost decade into perspective, it's difficult to not feel huge disappointment that my life stalled for so long. When you leave college you don't believe that the best and most productive years of your life will be written off but that's how it's worked out. Anyway, can't dwell. Onwards we march

Similar situation, exactly the same in the earlier years, it was only possible to achieve anything with total abstinence. I've been a bum for the past few years, whilst my younger brother who also doesn't have POIS has manage to successfully read a double degree. It's tough psychologically either way

I hear ya... But we've got to remain optimistic. The biggest problem about POIS is that you cannot talk about POIS. If you're having a really crappy day where you can't do any complex mental task, you can't say "hey, I'm really sorry but I have POIS". This is an issue. From an employers perspective, you can just look like a malingerer, someone with psychological problems or a secret alcoholic. There's no reference frame for society dealing with POIS right now. Variations of the symptoms may be much more widespread than we think but it's not something people would talk about and, unfortunately, when you have it you don't really appreciate what a healthy O is like.

Even if we didn't find  a total cure in the short term it would be nice to think that some day a POIS sufferer could discreetly explain to their employer what's wrong and produce an actual diagnosis from a doctor to justify it. It would be nice to think that health insurance companies would cover POIS. That educators would have to recognize and allow for POIS. That illness cover would extend to POIS and that eventually POIS would be cured and be no more. A happy day.

Anyway, I completed the survey too.

[daveman]

Thanks to all who have filled out the survey. We are starting to accumulate data, but we still need at least another 25 members.
I can view the data, but so far there is not a tool for public viewing. But since we are beginning to gather data, I will be creating a page in the databases section of the new page at www.poiscenter.com/index.htm. The present view is rather basic, but our new page will show cross-referenced information which is better at highlighting specific relationships.
Anyways for now here is a summary of what we have so far.
We are all males. Surprise!
We are 84% Caucasian, 8% oriental and 2 “other”
Symptoms are principally Mental Fatigue and Brain Fog,  followed by physical fatigue, Withdrawn and uncoordinated.
We feel mostly like we’re not all there, followed by Older, sick and stupid in equal proportions
Duration is spread out but most suffer from 3 to 5 days, tending slightly toward 10 days.
Orgasm frequency peaks at about once every 5 to 10 days
56% have gotten worse with time
44% have had POIS since puberty
We range in age from 19 to 65 with a small peak at about 32 yrs old
In medical conditions there’s a small peak of 30% of us with depression and the condition is parallel but aggravated by POIS
Things that can generate POIS symptoms other than orgasm are 24% not sleeping enough and 24% arousal without orgasm
Importance of sex in our lives is spread out across the whole board, with a slight peak at it being a “big part of our life”, 15% as opposed to 10%
As far as physical and mental traumas around the time of POIS starting we are 76% without associated traumas.
Drug use is low, with small peaks in alcohol and prescription mood alterers.

So that’s it for now.

Once I can cross-reference and begin comparing remedy effectivity we will start to see greater trends.

[Green]

Completed the survey, lets hope to get more people partaking!

[Habibou]

Finally, I got my urine test about neurotransmitters , 10 hours after an O :

3.54 creatinin
dopamin          91.50                    (170-256)
dopac                0.4                      (0.70-4)
hva                   1.90                     (2.43-5.20)
noradrenalin     10.30                     (15-30)
mhpg                     1.5                   (1.3-4.15)
vma                   1.60                    (2.10-3.80)
adrenalin            0.98                   (1.27-6.10)
serotonin               62.40                (61.50-116)
hiaa                        2.30                 (2-4.20)
hva/5htaa =        0.83                   (1.25-2.56)

We can notice that many standards are lower than the low average which means a lot for me ! As you can understand, I was very glad to discover so many abnormalities 

[POISon]

Has anyone taken a supplement that has brought on feelings similar to what you get when your in POIS?  I have been experimenting again with different supplements and yesterday I took Alpha Lipoic Acid.  This stuff really sets me back which is strange as it was a low dose.  The symptoms I get with it appear within the hour and last for about 24 hours. They are very similar symptoms to my POIS:
Very poor co-ordination
Derealization
extremely poor lack of concentration / cognitive
Joint aches
Facial Muscles pain which effect my facial expressions / talking etc (this is my most unbearable POIS symptom which comes around straight after an O)

I thought it was strange how a supplement can bring on such similar symptoms and thought maybe there was a relationship between it.  Other supplements do make me feel much better and so I convinced there must be a chemical/neuro imbalance that is extremely sensitive. 

 Are you taking an Alpho Lipoic acid/Acetyl-l- Carnitine Combo? If you are I would stick with Acetyl-l-carnitine as it is an awesome memory booster and cognitive enhancer for me. Alpha Lipoic acid was starting to make me very edgy so I dropped it. It could be that since Alpha Lipoic Acid is a strong antioxidant it is helping your body purge toxins out of your body at a pretty fast rate.I know not everyone believes  being affected by toxins,but there's toxins everywhere,even in the air we breath which often contains pollutants from vehicles etc.

[questforlife]

Finally, I got my urine test about neurotransmitters , 10 hours after an O :

3.54 creatinin
dopamin          91.50                    (170-256)
0.4 dopac          0.4                      (0.70-4)
hva                   1.90                     (2.43-5.20)
noradrenalin     10.30                     (15-30)
mhpg                     1.5                   (1.3-4.15)
vma                   1.60                    (2.10-3.80)
adrenalin            0.98                   (1.27-6.10)
serotonin               62.40                (61.50-116)
hiaa                        2.30                 (2-4.20)
hva/5htaa =        0.83                   (1.25-2.56)

We can notice that many standards are lower than the low average which means a lot for me !

wow some interesting results.  People say you should be happy to have normal test results.  Im sure we all disagree to some extent.  Normal results only tell us we have looked in the wrong place and mean the search carries on.  I have sent an email to Dr Goldmeier so im hoping I will get an appointment, I am going to ask for the same tests and see what comes back.  Im hoping we find a correlation between our results.

[questforlife]

Has anyone taken a supplement that has brought on feelings similar to what you get when your in POIS?  I have been experimenting again with different supplements and yesterday I took Alpha Lipoic Acid.  This stuff really sets me back which is strange as it was a low dose.  The symptoms I get with it appear within the hour and last for about 24 hours. They are very similar symptoms to my POIS:
Very poor co-ordination
Derealization
extremely poor lack of concentration / cognitive
Joint aches
Facial Muscles pain which effect my facial expressions / talking etc (this is my most unbearable POIS symptom which comes around straight after an O)

I thought it was strange how a supplement can bring on such similar symptoms and thought maybe there was a relationship between it.  Other supplements do make me feel much better and so I convinced there must be a chemical/neuro imbalance that is extremely sensitive. 

 Are you taking an Alpho Lipoic acid/Acetyl-l- Carnitine Combo? If you are I would stick with Acetyl-l-carnitine as it is an awesome memory booster and cognitive enhancer for me. Alpha Lipoic acid was starting to make me very edgy so I dropped it. It could be that since Alpha Lipoic Acid is a strong antioxidant it is helping your body purge toxins out of your body at a pretty fast rate.I know not everyone believes  being affected by toxins,but there's toxins everywhere,even in the air we breath which often contains pollutants from vehicles etc.

I was only taking alpha lipoic on its own, it was such a strange reaction to it.  I will take your recommendation POISon , thank you for replying to me .  You would not believe how many supplements I have got from experimenting, this one will join the tried and test box.

[daveman]

What is alpha lipoic acid, what is it for?

[Quasar]

Finally, I got my urine test about neurotransmitters , 10 hours after an O :

3.54 creatinin
dopamin          91.50                    (170-256)
0.4 dopac          0.4                      (0.70-4)
hva                   1.90                     (2.43-5.20)
noradrenalin     10.30                     (15-30)
mhpg                     1.5                   (1.3-4.15)
vma                   1.60                    (2.10-3.80)
adrenalin            0.98                   (1.27-6.10)
serotonin               62.40                (61.50-116)
hiaa                        2.30                 (2-4.20)
hva/5htaa =        0.83                   (1.25-2.56)

We can notice that many standards are lower than the low average which means a lot for me ! As you can understand, I was very glad to discover so many abnormalities 

Wow Habibou! Have you talked with your doctor about the results? It's surprising that you are low in many neurotransmitters: Dopamine, Noradrenaline, Adrenaline. Serotonin is also low, but within the average.

[demografx]

How reliable are neurotransmitter tests? 2 years ago, my endocrinologist said they were not reliable. But maybe he is wrong? Maybe things have changed?

[Quasar]

How reliable are neurotransmitter tests? 2 years ago, my endocrinologist said they were not reliable. But maybe he is wrong? Maybe things have changed?

I think they are not 100% reliable, because their levels depend on many factors, and they may not represent exactly the levels inside the brain. But at the same time, they can be correct and give clues of the real levels. I have read in some articles that they are not reliable, but i also have read in other articles that they indeed correlate to the brain levels.

So, if you do the test and your levels are borderline, it may not be significant, but if they are quite low, i think it means something is wrong...

[demografx]

Thanks for fleshing that out, Quasar!