[jplewin]

If someone wants to contact me, I'd be so grateful knowing I am not alone in this... my e-mail and MSN Messenger is jplewin@hotmail.com

The post above was an e-mail I sent to Dr Marcel Waldinger to several e-mail directions... if someone could help me contact him, I'd be so happy...

I'm very happy to have found this forum... I hope someone answers it jejeje.
I've suffered a lot because of this, nd I hope this can help us find a solution to our problem.

Saludos desde Chile
Juan Pablo
JP

[B_Jim]

 

[B_Jim]

Can you take your temperature when you have heat feelings (> 37.5 38°C more) ---> I've never done it, but I clearly feel heat waves and transpiration in the aftermaths of orgasm. I'll do it next time.

Yeah, there is a huge difference. When your temperature is clearly showed it's a body reaction (inflammation). The body "fights" as when you have a flu.
But if it's only a heat feeling, it's only nervous (probably hypothalamus temperature center or something). To my experience, heat feelings = serotonin shut down.

Thanks of list of meds !
Clonazepam is one of the best derealization/concentration problem du to Gaba.
Some guys have less symptoms with benzo, that 's not your case.
Risperidona, i dont know it , i will make searchs. Read what Tracy wrote above and the connexion dopamine-med.
Escitalopram is the second ssri to fail.

[B_Jim]

Two intersting articles :

1/ A new view on Hypocortisolism :
http://www.cfids-cab.org/cfs-inform/Hypotheses/fries.etal05.pdf

2/ "Mild Adrenocortical Deficiency, Chronic Allergies, Autoimmune Disorders and
the Chronic Fatigue Syndrome: A Continuation of the Cortisone Story"
http://cat.inist.fr/?aModele=afficheN&cpsidt=4063186

"Mild Adrenocortical Deficiency, Chronic Allergies, Autoimmune Disorders and
the Chronic Fatigue Syndrome: A Continuation of the Cortisone Story"

Jefferies,W.McK., Med Hypoth 1994; 42: 183-189

"When patents expired on cortisone and cortisol, the more potent derivatives, whose patents persisted, were promoted more vigorously and the natural hormone tended to be forgotten. Package inserts no longer differentiated between physiologic and pharmacologic dosages of cortisol and it was implied that all of the grim side effects might develop at any dosage level."

"Most physicians practicing today are therefore under the impression that any dosage of cortisol can produce any of the serious side-effects that occur only with administration of large, pharmacologic dosages of this normal hormone."

"Reports documenting the safety and effectiveness of physiologic dosages of cortisol were published in reputable medical journals over 25 years ago, but computerized reviews of the medical literature, such as Medline, do not yet cover publications that remote, so few physicians today are aware of the existence of these reports."

"One of the most alarming effects of pharmacologic dosages was impairment of immunity, causing patients to become susceptible to infections.... It has even been suggested that the increased production of cortisol that occurs at the onset of infection may serve to limit the reaction from overshooting and hence would be consistent with the anti-immune effects of pharmacologic dosages, but a more likely explanation of this increased production is that of Ingle, which states: "The increased secretion of adrenal hormones serves to meet an increased need during stress and tends to maintain homeostasis rather than to disturb it. The increased secretion does not cause a state of hypercorticism such as develops when the titer of these hormones is increased artificially in the absence of need."

"Evidence that cortisol impairs immunity only in large, pharmacologic dosages and that in physiologic amounts this hormone is essential for the development and maintenance of normal immunity has been reported by investigators over the past 40 years, but largely overlooked,..."

"Before patients are given other hormones, tests of the function of the glands that produce those hormones are usually performed, but tests of adrenocortical function are seldom made on patients before the administration of glucocorticoids."

"Normal ranges for blood cortisol levels and other tests of adrenal function have been determined on subjects who did not have obvious adrenocortical excess (Cushing's syndrome), or deficiency (Addison's disease), or panhypopituitarism,or any other apparent illness, and are rather broad. Hence they may include patients with mild deficiency or excess of cortisol. Also it must be remembered that resistance to cortisol may occur because of a defect in receptor function,so blood cortisol levels in the normal or even supranormal range do not exclude the possibility of symptoms associated with deficiency of cortisol effects."

"If cortisol is administered to patients with mild primary adrenal deficiency in an amount less than a full replacement dosage, there appears to be no summation effect beyond the reaching of an optimum level since patients receiving such dosages have not developed hypercortisolism. If they receive a full replacement dosage for a prolonged period, however,their adrenals might be suppressed sufficiently to impair further their resistance to stress."

"As with patients with severe adrenal deficiency, if a patient with mild adrenal deficiency has evidence of an active inflammatory processor infection, a larger dosage of cortisol, up to 20 mg 4 times daily, in conjunction with a suitable antibiotic or other type of therapy, is advisable,but when this condition is under control, the dosage of cortisol should be tapered to the maintenance level (between 2.5-7.5 mg four times daily)over 2 to 4 days."

"During exacerbations, patients with allergies or autoimmune disorders need to take larger dosages of cortisol (20 mg four times daily is usually adequate), but as soon as symptoms are under control, the dosage should be tapered to a physiologic maintenance dosage. If this is not possible without a return of symptoms, a careful search should be made for obscure infection or other persistent source of stress that is preventing the return to a safe maintenance dosage."

"Since subreplacement dosages of cortisol do not produce an excess of glucocorticoid, they have not tended to promote the development of osteoporosis or any other undesirable side-effects that can result from administration of large, pharmacologic dosages."

"Patients have been treated with this schedule of cortisol or cortisone acetate for as long as 40 years without significant problems. Because some of these patients had ovarian dysfunction and infertility, and because continuation of small, physiologic dosages helped to protect against miscarriages,over 200 babies have been born to women who continued these physiologic dosages through their pregnancies and sometimes during their postpartum(including nursing) periods with no evidence of harm to either mothers or babies."

[mellivora]

Welcome to the forum jplewin, TracySt, and bobsie. Thanks for sharing your stories with us, it’s good to hear from you.
B_Jim you seem to have spent a lot of time researching possible explanations for our syndrome and you have given me renewed inspiration to do the same. I have some scientific/biological  background but not medical. The internet is a wonderful tool for us all.

Demografx, thanks for your continued updates on your Levitra trials etc. Having read a bit about Levitra I can’t explain why it might work but I’m definitely no expert and if its  helping you then that’s great! I was interested to read that you are on ADD stimulants since low dopamine may underlie ADD/ADHD and B-Jim’s sources suggest dopamine may be at the heart of many of our problems.

I remember reading somewhere that someone suffering POIS or at least sexual exhaustion, had hormone level tests before and after orgasm and was found to have normal hormone levels except for elevated prolactin (permanently elevated not normal post-orgasm refractory period). (I thought it was a post on this forum but now it seems not as I can’t seem to find it again at the moment). Anyway this is also interesting because prolactin seems to inhibit dopamine release. Not just that but prolactin could be related to some autoimmune problems (something I’ve only read briefly about so far but there seem to be a lot of references on the internet). So whilst we have these two theories of dopamine/serotonin  deficiency and POIS (autoimmune reaction), they could very well go hand in hand. But I’m just speculating and don’t have enough knowledge (yet!).

Personally, I’ve always seen a resemblance between my symptoms and an allergic reaction in the way I get pressure in my head and sinuses  - it just feels like some sort of allergic reaction. So Dr Waldinger’s POIS seemed to fit when I found out about it. But I wouldn’t really say it feels like flu and  I don’t get sweats or muscle ache. One thing I have long noticed is that I feel worse in the mornings than later in afternoon and evening. Our biological clocks are regulated in part by melatonin which interestingly is synthesized from tryptophan via one of our suspects, serotonin. Melatonin also has effects on the immune system.
I’m not suggesting at all that melatonin has much or anything to do with our condition but clearly the roles, interactions and balances between all these things – the various neurotransmitters and hormones is complex and there seem to be all sorts of possible knock on effects which are doubtless different in different people.

I’ve just been suffering another episode these past few days which has affected my work. It’s so frustrating. But its great to be able to talk about these things with people who understand what its like so thanks for your continued posts

B_Jim, Coffee and tea don’t work for me either in terms of alleviating tiredness. Infact sleep doesn’t seem to help much when I’m in a post-orgasm phase– I wake up feeling tired regardless of how much sleep I have.
I’m interested in hearing all you are able to tell about this Zoloft case!

We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!)to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments.

Best to all,

[demografx]

B_JIM I THINK IT IS A COMBINATION:  Levitra, Testosterone injections, ADD supplement (Adderall), Caffeine (B_Jim, instead of coffee/tea try No-Doz tablets?), and now also Cymbalta. Today, POIS DAY #1 but no Levitra. ** And feeling good! ** But yesterday I had an injection of testosterone, so it is fresh in my system. Today lots of caffeine. Plus the two other psych meds I mentioned in the morning. Best wishes to you again.

demografx, your symptoms :
"4 days of extreme exhaustion, depression, foggy cognition, burning FINGERTIPS"

You have effective results with levitra only for these symtoms then ?

What about your ADD supplement ?

Coffee/tea dont work for me (make me crazy and anxious)

[demografx]

B_JIM, you stated "Coffee/tea dont work for me (make me crazy and anxious)"

In your case then, No_Doz is not a good idea; it is basically caffeine-in-a-tablet, so it will make you "crazy and anxious".

[demografx]

When I explained Levitra to my psychiatrist, he suggested experimenting with Cialis, since it has a 36-hour effectiveness. Perhaps I will.

Thanks for your continued updates on your Levitra trials etc. Having read a bit about Levitra I can’t explain why it might work but I’m definitely no expert and if its  helping you then that’s great!

[demografx]

DR WALDINGER: Several people (including myself) have been frustrated trying to reach Dr. Waldinger. Since he is the foremost POIS author/researcher, he could be an invaluable ally here. So please feel free to try to reach him! (I will try, too). If you reach him, tell him about this site! Below is one of 2 places he is listed at:

Dr. Marcel Waldinger
Associate Professor in Sexual Psychopharmacology,
Utrecht University,
Department of Psychopharmacology,
Faculty of Pharmaceutical Sciences and
Rudolf Magnus Institute for Neurosciences,
Utrecht, The Netherlands

Tel.: +31 30 253 91 11 (operator)
Tel.: +31 30 253 70 00 (information and advice on study programmes)
Fax: +31 30 253 33 88

[demografx]

DOPAMINE
I saw my psychiatrist today and he reviewed this site. I mentioned to him that dopamine seems to be a narrowed-down suspect in our POIS-cure search. He replied that "[There is] no more [of a] powerful dopamine releaser than Adderall.  Would not suggest cocaine." As I mentioned, I am taking Adderall, which is basically an extended release amphetamine.

Yesterday, I posted that it was Day #1 and the timing coincided with the timing of my taking 60 mg Adderall XR. Interestingly, I did _NOT_ take Levitra yesterday or today, but was still relieved of a large degree of POIS sysmptoms! Which continues today, Day #2. Also, though, as I mentioned, I had my testosterone injection two days ago, so the fresh circulation of testosterone may also be a contributing factor. Perhaps the combination?

This doctor did not have great hopes for me with Zoloft, because he said that everyone reacts very uniquely to it (and to all antidepressants). I have now switched to Cymbalta, which seems to be alleviating depression better than the previous Effexor. But in 30-60 days I may try Zoloft, and the doctor said he would cooperate.

Perhaps the new Cymbalta in y system is yet another contributing factor to this current success? Placebo effect? We must consider everything.

This is a frustrating road for all of us. But with some successes already and future hopes which none of us have had before we banded together, we can think much more positively than the past.

Thanks everyone for the great support. I would of course, highly welcome any thoughts, questions or comments on what I just reported.

Best regards.

[B_Jim]

Very interesting. The 2 roles of serotonin could be to the reduce the "lack of concentration/derelization" symptom and to slow down the regulation of dopamin => adrenalin conversion turnover. Serotonin is the conscience neurotransmitter and dopamine the awakening state neurotransmitters.

[demografx]

LEVITRA
Today is "Day Zero" and I took Levitra and the usual meds, PLUS a lot of coffee. When I feel my energy go down, I try to counter it with caffeine. That seems to work best during the day. Today is not as good as my last report above, but still better than most episodes in my life. JP mentioned that we could exchange our experiences in how POIS has disrupted our lives. In my case, it has been severe. Even when the symptoms go away after 3-4 days, it is ALWAYS hanging over my head because I know POIS is "just around the corner", whenever the release happens. But now there is new hope, especially with the 8 people here. For YEARS I denied there was a "POIS" - - I always thought - at first - the symptoms were "something else". I just couldn't believe that such a natural pleasure could cause such great harm! Another thought: today is not bad for "Day Zero". The frequency is way up, probably due to the testosterone. Hope this post is not rambling too much. Best to all.

[demografx]

POST ORGASMIC MENTAL ILLNESS?
I just now sent a request to the moderator to change our topic from POST ORGASMIC MENTAL ILLNESS to POST ORGASMIC ILLNESS SYNDROME (POIS). This would help more people to find us, I think.

[demografx]

LEVITRA, ADDERALL, CYMBALTA, TESTOSTERONE, CAFFEINE?
Today is Day 1 of POIS. Feeling pretty good, not perfect. Just a little sluggish. I just had 2 Starbucks cans of "double-shot espresso" - Anyway, I posted all the meds above because now I'm not sure which one - or which combination - is working! One theory is emerging: the closer I am to having taken the testoserone injection, the better I feel. And I do feel (intuitive only) that Levitra plays a role (I'm not sure it's the pivotal role I originally thought because I once did NOT take it and I still felt better!) Although MELLIVORA (a member of this group who posted above) and my psychiatrist as well, seem befuddled as to why Levitra should work. But as MELLIVORA says, if it works, be happy  : - )

Sorry, everyone, that I don't have EXACT answers, but I do see promise and hope. The most I have had in over 30 years of POIS!!

Best regards.

[B_Jim]

Your experience with testosterone is intersting. We have few infos on the release of testosterone and sperm regeneration.
For dopamine, the problem of taking stimulant is you will increasing adrenaline/noradrenaline too. That's probably why i have problem with coffee.   So, to keep a high serotonin level maybe it's better to work with inhibitors.   
I'm searching guys with zoloft experience but very few have tested it. I will probably test myself soon at low proportion. (25mg)
Cymbalta is inefective too ? It's the third inefective ssri too then. As effexor, it works on serotonin/noradrenalin.

[jplewin]

Hi everyone...
demografx... you seem to be very enthusiastic! I'am too since I 'met' you here.
I would give you an advise. Since you are testing medication with yourself, I'd do what it's done in some motorsports (I practice karting, jejeje). This is to test every change in the setup one at the time... because if you don't, you don't know what really improved your performance. Maybe that can help you/us get better results.

Greetings!
JP

[demografx]

Thanks JP! Today is POIS Day 1 and I'm feeling good (not "perfect" but better than I have ever been in 30 years of POIS-misery!!!)

Hi everyone...
demografx... you seem to be very enthusiastic! I'am too since I 'met' you here.
I would give you an advise. Since you are testing medication with yourself, I'd do what it's done in some motorsports (I practice karting, jejeje). This is to test every change in the setup one at the time... because if you don't, you don't know what really improved your performance. Maybe that can help you/us get better results.

Greetings!
JP

[demografx]

Your experience with testosterone is intersting. We have few infos on the release of testosterone and sperm regeneration.
For dopamine, the problem of taking stimulant is you will increasing adrenaline/noradrenaline too. That's probably why i have problem with coffee.   So, to keep a high serotonin level maybe it's better to work with inhibitors.  
I'm searching guys with zoloft experience but very few have tested it. I will probably test myself soon at low proportion. (25mg)
Cymbalta is inefective too ? It's the third inefective ssri too then. As effexor, it works on serotonin/noradrenalin.

B_Jim....no, I did not say Cymbalta is ineffective. It may be EFFECTIVE, because two trials ago, I did NOT take Levitra but still felt much better. I had JUST BEGUN Cymbalta, and I was also close to testosterone injection, so I do not know which helped the most. I suspect CYMBALTA helped most, because in the past when I was on Effexor - and also taking testosterone...it did NOT seem to help.

Best regards

[demografx]

Hi everyone...
demografx... you seem to be very enthusiastic! I'am too since I 'met' you here.
I would give you an advise. Since you are testing medication with yourself, I'd do what it's done in some motorsports (I practice karting, jejeje). This is to test every change in the setup one at the time... because if you don't, you don't know what really improved your performance. Maybe that can help you/us get better results.

Greetings!
JP

THANK YOU JP FOR ADDING YOUR ENTHUSIASM!!

[demografx]

THANK YOU TO THE MODERATORS FOR CHANGING THE NAME OF THIS DISCUSSION TO POIS! (and not Mental Illness!)

[demografx]

Let me invite you all to a community dedicated to POIS.
It's a more interactive place where we can post our feelings and improvements.
Hope you all join in and maybe more people will come over and share their experiences.

The site is:

http://www.orkut.com/Community.aspx?cmm=39047985&refresh=1

(copy and paste)

Please don't be ashamed of joining in... I think it will benefit our comunication a lot.

Hope to see you in.

JP

THANK YOU JP I JUST JOINED THIS GROUP AND RECOMMEND IT TO OTHERS HERE>

[John21]

Hi guys, it has been a while since I initiated this thread, I really didn't expect to get any responses like yours so I haven't checked back. Today I received an email from Neil notifying me of your responses. Wow, it is nice to know I am not alone after all. I have only gleaned your messages so far, I will soon read them in more depth.

Personally I am chaste now and avoid the problem altogether. As I said in my first post, when I was sexually active I was convinced that avoiding all milk products produced the most marked reduction in symptoms. I am wondering, have any of you guys experimented with a dairy free diet?

...looking forward to discussing this syndrome with you all.

John

[John21]

Remembering my symptoms: they were apparent in the morning following sex, whereas I instantly feel like I am altered mentally:  mentally drained (but not physically) and would feel intensely unwell (the fires of hades comes to mind) Perhaps it could even be described as still being "in" sex somehow.  After a few days it would subside and be replaced with a burnt out mental state that would continue for days. Overall the reaction would approximate a week in duration. During this time I have to work hard to hide this mental problem from others such that it does not affect my employment and relations with others. 

Another point that may be worth mentioning is that I have always had severe premature ejaculation. I'm talking about one or two strokes following penetration. I have tried many medications over the years, mainly SSRIs, and Paxil did somewhat reduce the PE, but not to a level that would seem normal. Neither the Paxil or any other SSRI ever helped me against the post orgasmic syndrome.

Around age 25-30 I was very active in going from doctor to doctor,explaining this very personal problem. It is very hard to talk about something that no one had ever heard of before, yet is plain as day to yourself. The most demoralizing part is that doctors seem to be inclined to not believe my adamant assertions that it is physical in nature, thinking that it's reality most likely has a psychological basis (such as guilty feelings toward sexual activity). Too bad a broken mind cannot be seen like a broken leg.

These days I feel loneliness, as the POIS/ insomina preclude me from entering in a real relationship, and I feel shame and loss of not having a family of my own.

I am interested in hearing if anyone has had any more success with medication.

John

[John21]

Jim, hi. Zoloft was one of the medications I had tried, they all had an effect on my mental state, easing my anxiety but not the problem. By the way if any of you are on SSRIs and want to stop using them do it sloooowwwwly, especially Paxil. I stopped it suddenly and had quite bad consequences: hearing cutting out, the "zaps", pulsatile tinnitus. I still have the pulsatile tinnitus to this day, approx 15 years later. I think that doctors are more aware of this problem now.

John

[John21]

JP,
I didn't want to say too much on your scrapbook, I don't know how private this issue is between you and your friends. I'm glad to hear you could discuss it with your parents, I can't imagine doing that! Your symptoms don't seem to match mine exactly, although reading yours brings back to mind minor aspects of the syndrome I have experienced such as flushing of the face, enhanced bowel movement ease, sore throat, somewhat swollen glands in the neck. At times during intense discomfort I have measured my blood pressure being far above normal, which I was able to demonstrate to my doctor. When I was not experiencing this condition I was otherwise healthy, blood pressure and all.

As you have searched the web you probably have come across the website actionlove.com, as I have. I don't think the author of this site "Dr Lin" is a real doctor, and I find his potions for sexual problems rather dubious. (Actually I tried them once, after reading testimonials)  But you might find it interesting to read the accounts of people listed there who have problems post-sex.  He will go into some longwinded technical analysis about what is causing the person's problem (which I suspect he truly believes yet is probably gibberish). Anyway you might wish to read it if you haven't already.

You mention you are taking schizophrenia medication, did you have schizophrenia before these post-sex problems developed? Or is this merely an attempt to cure this specific problem?

I'd love to hear more about your situation (and others here as well). Nice to hear from you.

John