[demografx]

MRI OF THE BRAIN: UPDATE

In search of hormonal culprits for POIS, a 400% higher than average prolactin count was found in my bloodwork, so my endocrinologist requested an MRI of the brain. His email to me today:

"Your MRI revealed a partially empty sella - the part of the base of the cranium where the piuitary sits. There is no evidence of a tumor. Empty sellas may not be associated with any pathology. Make an appointment - and be prepared for more blood testing."

Needless to say, I'm grateful for no tumor.

Prolactin has become an interesting topic lately for me, since a friend who is a PhD biophysicist and an HIV/AIDS pioneer suspects prolactin - and "IL-6" - is a key hormone that is implicated in POIS because of the flulike symptoms as Dr Waldinger, the POIS pioneer, found. I'm still trying to decide if my symptoms are "flulike". Wipeout fatigue and brain fog can sometimes feel flulike (without a runny nose!) Here's his email to me today (before the endo email):

" Hi, [Demo],

This is pretty interesting.  Please do keep me posted on the MRI results. 

In addition to the more familiar role in stimulating milk production, there is also a correlation between high prolactin levels, inflammation and lupus erythematosus.  There may be a chicken-and-egg question here, given that high levels of inflammatory cytokines (including IL-6) stimulate high levels of prolactin production.  Do high levels of IL-6, for example, produce both, the flu-like symptoms and the high prolactin? 

http://www.ncbi.nlm.nih.gov/pubmed/11503136?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedreviews&logdbfrom=pubmed

http://www.actabiomedica.it/data/2007/supp_1_2007/chuang.pdf

http://www.ima.org.il/imaj/ar05nov-14.pdf

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6W8V-4MG6JXX-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=87f542042726d68ef791866ccd680235

Hyperprolactinemia (high prolactin levels) can be treated with Parlodel (aka bromocriptine) under the appropriate circumstances.  This dopamine receptor agonist is not a benign drug, so you should be quite insistent in fully understanding the risk/reward profile of your situation should it come up in discussions with your physician.  This is a particularly relevant question if the prolactin levels are an “effect” as opposed to a “cause”. 

http://www.mayoclinic.com/health/drug-information/DR600265

http://www.csmc.edu/pdf/BROMOCRIPTINEANDCABERGOLINE9162002.pdf

I hope you and yours have had a happy holiday season, and that your new year will be healthy and productive.

All the best,
[name] "

[demografx]

OXYTOCIN

Some of you may find some earlier oxytocin discussions here at the POIS forum interesting:

http://www.google.com/search?hl=en&q=oxytocin+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com

[pyropeach]

Guthrie,
This makes sense to me. When I'm in a POIS episode I find it hard to reach for my vocabulary and sometimes I find it difficult to pronounce words

I too find it hard to find words and I often mispronounce words during a POIS episode. 


As for my success with Relora...it is only partial.  Though it significantly reduces the stress and anxiety components, I still struggle with cognition and memory - especially short term memory - its like my IQ drops to zero.  Only deep sleep has accelerated my recovery process, which, as I read, is responsible for resetting chemical levels. 

Demo - I look forward to your MRI results as my own MRI revealed a small, 4 mm growth on my pituitary which may be responsible for my slightly elevated prolactin levels.

[SteveD]

The word lupus is frightening. I prefer to think that many autoimmune disorders works almost the same way.

Jim,

I find the word lupus frightening, too...and sobering. I remember in Gandhi's work his observation that all types of diseases stem from misusing sex. I could hear that because it didn't feel like he was moralizing but simply stating factual biophysical information. Makes me want to work harder at a real solution to POIS.

[John21 (OP)]

Demo, I'm glad to hear there is no tumor! Hopefully the "partially empty sella" finding will lead to some possibilities for you.

Empty Sella Syndrome

[underwater]

Steve--
Do you have a set time that you do your exercises?
I always swim in AM between 8-11----------------
Do you have circadian rhythms that affect you?
I generally go into a dysphoric swoon in the mid afternoon for 2-3 hours--
Do you feel your chemistry? I actually feel the onset and fading of moods brought on by chemical changes--Often when I get nocturnal panic attacks I can almost feel the switch go off--I probably should work out twice a day,AM and late afternoon--
However, I agree with you that the behavioral and biochemical are two sides of the same coin---For me, when I have been in a state of equanimity, my symptoms of all afflictions (anxiety & POIS) have diminished. Endorphins have been the big helpers for me. Do you ever get physically tense? When I'm going thru a tense part of the day, my muscles often tighten in the loser back etc.--This follows quickly with nervousness and mild depression and chills---This is all made worse if I didn't work out that day-------It generally fades off after a couple of hours---POIS makes the whole thing worse for 3/4 days----This last year I've tried to stay away from POIS like the plague--

[girlwind]

Do you feel your chemistry? I actually feel the onset and fading of moods brought on by chemical changes--Often when I get nocturnal
panic attacks I can almost feel the switch go off--I probably should work out twice a day,AM and late afternoon--
However, I agree with you that the behavioral and biochemical are two sides of the same coin---For me, when I have been in a state of equanimity, my symptoms of all afflictions (anxiety & POIS) have diminished. Endorphins have been the big helpers for me. Do you ever get physically tense? When I'm going thru a tense part of the day, my muscles often tighten in the loser back etc.--This follows quickly with nervousness and mild depression and chills---This is all made worse if I didn't work out that day-------It generally fades off after a couple of hours---POIS makes the whole thing worse for 3/4 days----This last year I've tried to stay away from POIS like the plague--

Underwater--
I feel some similar symptoms, which I attribute to having CFS. This affects my brain chemistry, especially during
"viral episodes," and makes me feel that mentally skewed combination of slo-mo combined with overly amped.
I describe it to my acupuncturist as "going as fast I can in slow motion." The endorphins definitely feel diminished.
What I notice is that this happens when my energy is REALLY low. So even though I might be feeling hyper, it's a
fake hyper, with no real energy behind it. I can't work out vigorously when I have this happening, as I just deplete
myself more. I can only slowly ease into exercise with ten minutes of yoga or walking, 2-3 times a day. Overdoing
does me in, but total inactivity doesn't help either. Sexual stimulation, even without orgasm, feels aggravating to
the overall state of body/mind at times like that, so I won't even consider going there.

[Bizzy]

Demo, I'm glad to hear there is no tumor! Hopefully the "partially empty sella" finding will lead to some possibilities for you.

Empty Sella Syndrome

Yes, the possibility that part of his brain has been eaten away by this condition. Sorry not trying to scare you demografx but what do you think ?

And Hi....i havent been here for a while but am amazed at you people....keep going....About a year ago I wrote quite a few articles suggesting a pituitary-hypothalmic problem as being the root cause for this condition....a year later you guys have chased the problem to this area....thats interesting....did you know that the depression linked hormone CRF - corticotropin stimulating hormone is also made by the same neurones that make oxytocin....if those neurones are not making the 'love hormone' oxytocin then they might be making CRF which has the opposite effect and can cause brain shrinkage by persistantly raising cortisol.

[underwater]

Girlwind--
It seems like we may have similar issues. If I can generalize, you have CFS and POIS.
I have GAD and POIS. It seems like we both need to treat the former issues first (CFS and GAD). I've had GAD my entire adult life, but I have successfully dealt with it 90% of the time. Over the last 10 years, POIS, as a secondary concern has increased its negative effect on my entire nervous system (thus avoidance if I can). I can trace its source to behavioral/psychological triggers with corresponding biochemical manifestations. In this forum I have not discussed all psychological concerns as these are only personally relevant, but nevertheless critical. When I have had, out of necessity, to use small doses of Benzodiazepines, this had been a choice.
Unfortunately, they work great for only a certain period of time and then STOP suddenly. At least I know that GABA (for whatever it's woth) nearly cures me when it is increased. I only use this as a last resort. Right now, I am in a drug free period looking to rid my GAD by use of supplements, diet changes, exercise changes etc. By significantly reducing GAD, my working assumption is that it will reduce POIS. I think you used the term "amped". I cannot get hyper excitable, as this messes everything up. Sexual excitation for me, unfortunately, is just another nervous sytem overload. Orgasm just takes it to precipice and "over". I am optimistic, however, that I will find ways to diminish GAD and POIS and return to better times that fortunately for me have always come. However at 60, I am a little nervous.

[martin88]

Again a major finding Demografx, however I'm not so happy to hear about this. I wouldn't have expected such a problem. Is it really the cause for pois, the treatment will say it if any.
Your pois started a long time ago, do you have this since the beginning... What is amazing is that your usual doctors didn't find this. It was a simple blood test. You had to ask yourself for a prolactin test! I can't believe this. Good luck for the next steps.

Pyropeach, your experience is also disconcerting. You know you have a small tumor and you're still here for a solution. Is there a suggested treatment ? (Maybe I should read your precedent posts)

[SteveD]

Hey guys,

Been reading the links and pondering prolactin...Dismal stuff, Lupus, Arthritis, etc.

I swam 70 laps in 95" and am not being orgasmically sexual and feel absolutely no POIS symptoms...

That's going to have to do for this day...


PS also my partner and I tried a cup of Fenugreek tea tonight. Bitter, but, not too.

Wishing wellness to all tonight

[CertainlyPOIS]

whoa demographx you are on fire with this prolactin, good going.
Do you know its half life in body am wondering if that can be correlated to the how long POIS las.

[acronym]

RE: Demografix and MRI
I don’t know whether to say sorry to hear about the pituitary diagnosis or not. Its not really good news but I feel a diagnosis regarding the pituitary will benefit your wellbeing now as regards the prolactin. No tumor was good news though. In a past post of mine I mentioned a pituitary problem. Like you its ESS, with mine being only 10% normal size. Its a bit unusual that with a reduced pituitary mass there is an elevated hormone output. I had my prolactin levels measured for the first time this year and it came back normal (day after orgasm). I would have liked to have had it measured years ago when my POIS was worse but the test was outright dismissed by my doctor then. In my case I have abnormal low GH, LH, DHEA, with low testosterone, and moderately elevated ACTH.

ESS can be congenital, result from birth delivery, viral damage, car accident/head trauma. For some people there is no noticeable deteriation in their health, and consequently many endos don’t make a big deal over it and just treat hormonal deficiencies if they occur, though in my case getting script for growth hormone is not so easy.

I mentioned that I would post about POIS on a pituitary site after reading about some guy having pituitary disorder (think it was ESS) and suffering from pois. Well, my post had 146 views but no responses, so unfortunately I can’t add any weight to our case on that front.

Reducing your prolactin levels should result in boost to your libido which I don’t know if you see that as a good thing. You can probably also do away with the levitra too.
I could be wrong but I thought I remember reading that you mentioned having 'wet dreams'. I haven't had them for years and it surprises me that you could still have them with high PRL levels.

Also in your recent post you mention your PHD friend also suspecting high IL-6 as possibly being implicated in pois. I can't remember my IL-6 readings but I do know I have high levels of cytokines from chronic infection/s. The high cytokine theory would fit with the people who have CFS or auto-immune conditions on this forum, but I dont know if it would account for many others. I personally think that some of the people on this forum who have been benefiting from special diet (no lactose, recudeced carbs/grains, no sugars, no alcohol) plus also benefiting from taking garlic could in fact be suffering from bowel infection/bacterial overgrowth.

I'm not sure if your PHD friend works directly with HIV/AIDS patients but I would be interested to know if people with HIV infection suffer from pois?

[Guthrie]

I'm not sure if your PHD friend works directly with HIV/AIDS patients but I would be interested to know if people with HIV infection suffer from pois?

A while ago, when I was first looking for other POIS cases online, I came across these links after googling "fatigue after orgasm":
http://www.thebody.com/Forums/AIDS/Fatigue/Archive/FatigueCause/Q90074.html
http://www.thebody.com/Forums/AIDS/Fatigue/Archive/FatigueCause/Q166244.html
http://www.thebody.com/Forums/AIDS/Fatigue/Archive/Sleep/Q166355.html

They seem to be from an HIV/AIDS website.  So, perhaps that could add to the possibility that POIS is related to an autoimmune reaction.

[SteveD]

Demografx,

>>>We're all different. My NE's have always been as forcefully devastating as the real thing.

I feel sad , but a little envious, of the clarity you experience in the consistency of your experience of the illness.  I have, unfortunately, let  the 10-15% 'free passes' I have experienced on being orgasmic lead me to 'countless vain attempts' to try to 'control and enjoy' this illness.

On beginning to read previous entries in this thread I saw that you have experimented with chastity. What was your overall impression with using that as a technique?

Steve D.

Thanks, Steve. It doesn't work (for me).

As several others have noted, Steve, abstaining/chastity eventually creates a tension for many people that can be as bad as POIS! In my case it has also led to depression, loss of libido and ED.

On the positive side, if one can and wants to handle chastity...comfortably...then one is cured of POIS!

For me, the current comfort level is approximately 4-5 weeks of abstention at a time.

Demo,

I've been thinking 'gingerly' about your post for nearly two weeks. My comfort level time in chastity is a maximum of about 18-20 months. Then the perpetual loneliness seems absurd to me. But, I truly want to be 'cured of POIS', and, at current, this seems to be the only completely effective therapy, for me. I know 'it doesn't work for you' as a strategy, but I wanted to thank you for your frankness. I love the truth. Gandhi said "God is Truth" and that's what I believe.

Steve

[Guthrie]

Yesterday was a very strange day for me.  Let me describe what happened, and you all can see what you make of it.

Late Friday night/early Saturday morning (4:00 a.m.) I had a release.  I wanted to test to see how the fenugreek would work if I took it AFTER release, rather than before.  So, after the release, I took 6 fenugreek capsules, and then went to sleep. 

I woke up at 11:30 a.m. on Saturday.  For the first couple of hours, I felt just a little light-headed, but then, from around 2:00 pm to 6:30, I was feeling pretty bad POIS-wise.  It was hard to think, hard to talk/verbalize, and I felt very spacey and brain-foggy.

That experience seemed to indicate that the fenugreek is NOT very effective when taken AFTER an orgasm has already occurred--an observation which is interesting in itself. 

BUT THEN, at 6:30 p.m. on Saturday, I had another release.  I hadn't been planning on it, especially since I normally avoid sexual contact with my partner during my POIS-stage, given that I feel pretty shitty.  But yesterday, for whatever reason, it happened.

Immediately after release, I fell asleep for about an hour.  When I woke up at 7:30 p.m., I felt much better--I was thinking clearly and very talkative and energetic!  I still felt a little physically tired, but not too much.

I went to sleep at 2:00 a.m, and woke up at 10:30 a.m. this morning (Sunday).  I felt fine the whole day today.

So, there are at least two weird things: 1.  The fact that I felt better after the 6:30 pm release, when I had been feeling POIS-bad the whole day.  2.  The fact that I felt good today, after having the release yesterday evening--in my experience, the 'day after' has always been bad. 

I don't know how to account for it.  Possibly it could be the phenomenon that Counterpoints described:

Something else is quite notable.  I can alleviate my symptoms, 100%, with repeated attempts at orgasm.  This is really remarkable.  Sometimes it takes 5-6 subsequent orgasms to return to "normal", but it always happens.  And it's very real. This might say a lot about what's happening -- how sometimes one orgasm will "undo" the damage of a previous one.

Or (though this seems less likely) it could be from the fenugreek that I had taken 14 hours earlier, after the 4 a.m. release.  If so, this would mean that the fenugreek taken after the fact was not able to prevent symptoms from occurring for the first release, but that it then prevented the symptoms from the second release (while also causing the symptoms from the first release to suddenly stop as well).  But, the 14-hour time lapse seems like a long time for the fenugreek to remain effective.

The only other thing that I did differently yesterday was, at around 4 p.m., to drink a "Gimme Green Amazake Shake" (http://www.grainaissance.com/green.html), which I had never had before.  It seems to have some healthy ingredients, but it didn't eliminate any symptoms right when I drank it.  But, it could have also played a role in the 'resetting' after the second orgasm.

Again, perhaps neither the fenugreek nor the amazake played a role, and it was solely the "Counterpoints phenomenon."  I don't really know.  We'll see what happens in the future...

[SteveD]

Yesterday was a very strange day for me.  Let me describe what happened, and you all can see what you make of it.

Guthrie,

I get away , scott-free, 10-15% of the time. That was the most perplexing part of the disease , for me. Also for EM's there's an even higher percentage.

I'm curious. You're the first person I've heard mention a partner in the two weeks I've been posting. How does your partner respond to your illness?

[SteveD]

Steve--
1) Do you have a set time that you do your exercises?

2)I agree with you that the behavioral and biochemical are two sides of the same coin---For me, when I have been in a state of equanimity, my symptoms of all afflictions (anxiety & POIS) have diminished.

3)This last year I've tried to stay away from POIS like the plague--

Underwater,

1)No set times. My partner has two children and I have one. We both work, so we catch as catch can, but it's daily and very, very rigorous.

2)Your observation about diminished POIS symptoms in the 70's and 80's, combined with Demo's acknowledgement of a simple, but difficult way to eradicate symptoms, confirmed for me, the validity of the therapy that I had been using, on myself, prior to hearing the phrase POIS for the first time two weeks ago. There's something healing, galvanizing and powerful about being with other people trying to solve a problem as a fellowship. That communal power  was able to push me over the top to a commitment I knew was right for me, which is surrendering orgasmic sexuality. That doesn't solve NE's, but those are not a major problem for me, luckily.

3) I have spent 20 months come January 12, doing virtually nothing but trying to solve this problem. I am satisfied now and I am going to accept this solution and try my hand at something different. I'm going to memorized Hendrix's Voodoo Chile!

[acronym]

Guthrie
Thanks for the quick post with the HIV links. While it seems that pois is a condition that is suffered by HIV people, I picked up on the fact that it is certainly not across the board. These guys doctors (presumably HIV specialists had not heard of the condition and also it was the same with thebody.com doctor replying to these guys questions. Strange, like CFS, some suffer from it and some dont. Really frustrating in terms of tracking down the biochemical defect that accounts for it. One of the guys on that hyperlink complained about sore eyeballs. While I dont get that as bad these days, I used to, along with the inability to look people in the eye (an autism symptom) and sensitivity to light. Those symptoms used to really piss me off. I never had this bad all the times though. I never kept a health diary over the years but I did notice though that worse episodes were correlated to periods when I really pushed myself at the gym and also when I had increased orgasms per week.
I just read your post above where you mention Counterpoints having repeated orgasms (presumably in 24hrs) and avoiding pois. Thats just bizarre. How does that fit into a 'depletion' theory or an immmunity suppresion/disorder theory???

[girlwind]

I never kept a health diary over the years but I did notice though that worse episodes were correlated to periods when I really pushed myself
at the gym and also when I had increased orgasms per week.
I just read your post above where you mention Counterpoints having repeated orgasms (presumably in 24hrs) and avoiding pois. Thats just
bizarre. How does that fit into a 'depletion' theory or an immmunity suppresion/disorder theory???

Acronym--My experience is similar to yours, probably because of the CFS. ANY overdoing does me in, so the thought of
having repeated orgasms in the same day is absolutely NOT an option. In my case the "depletion theory" describes my POIS,
assuming that what is being depleted is part of the hormonal profile. That's why adrenal boosting and thyroid supporting
supplements have worked to lessen the effects of exhaustion, for both POIS and CFS symptoms.