Author Topic: My "cure"  (Read 20242 times)

guy26

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My "cure"
« on: October 09, 2012, 10:30:08 AM »
Hi everyone,

I was contacted by someone anonymously asking if I would share my experience and my "cure" with this forum. I'll try to be brief about a complex problem in exchange for being open to answering any questions.

I have been officially diagnosed with bipolar type II and (atypical) gender identity dysphoria. Additionally, I have had intermittent problems with what might be considered POIS. I have always had stronger climaxes than others. In fact, most partners that saw me climax for the first time thought that someone was wrong and became very concerned! But whenever I had an excessively strong orgasm, even by my own standards, I would feel absolutely horrible physically and emotionally. It is hard to articulate those moments and I never understood what caused it. It would acutely last anywhere from 30 minutes to a couple of hours and have a hangover like feeling for a day or two. Sometimes it was so bad that I would find myself crying in the shower trying to hide it from from my other half. I never talked about it with anyone because it didn't seem like that big of a problem compared to the other issues I was experiencing in life. Sometimes I felt anxious about getting an excessively strong orgasm because I could never predict when they would occur. I only knew that it was more likely to occur when I experienced hypersexuality. (Hypersexuality can occur during mania, which are both symptoms of bipolar.) When I read about POIS online, I had an "ah hah" moment and wondered if I had a milder form of it compared to others.

Now to the cure part.. I have struggled with atypical gender identity dysphoria since puberty. I never felt like a guy, but I sure as heck didn't identify as a woman either! I felt alone because I didn't identity with anyone! I felt unique in a bad way. And even worse the gender incongruity caused self destructive and risky behavior. When I felt that serious injury was imminent, I acquired and used depo provera. It is used as birth control in women, but it works equally well to lower testosterone levels in men. For a few months it was effective at alleviating the dysphoria and self destructive behavior. I was never willing to continue taking it on my own without some kind of professional supervision. Eventually I worked up the courage to work with a therapist. I didn't find success immediately because it took several years to find the right one. If you get anything out of this post, please don't give up!

With the right therapist and when I couldn't take the dysphoria any longer, I worked with my family doctor and endocrinologist to lower my testosterone levels. Everyone agreed that depo provera was a bad choice because of the mood instability that it caused when I stopped taking it. So instead they prescribed leuprolide acetate, which is a GnRH antagonist. It is very effective at lowering testosterone to castrate levels. The irony is that for about a week or less, it can significantly raise natural testosterone levels.

When I initially started the leuprolide acetate something amazing happened--I felt like a guy for the first time in my life! It was a short 4 days, but I went on to take the leuprolide acetate for a month. I stopped after a while because the castrate levels of testosterone was just too much. The leuprolide acetate was a LOT stronger compared to the depo provera. I spent the next 6 months talking to my therapist, my mom, and my other half about those 4 short days. Eventually everyone agreed that if it was physiologically reasonable to raise my testosterone levels within the normal range and to a level that would allow me to feel like a guy, it was worth seeking out an endocrinologist that was willing to work with me and give it a try. After finding an endocrinologist and running some blood work, I was given that opportunity. To make a long story short, the androgel worked far more effectively than the first few days of the leuprolide acetate! It was so strong, it was intellectually shocking. We decided to go more slowly and work up to a target dosage. I was at the lower end of the normal range and it was decided that I should try the middle of the normal range.

I would describe this experience akin to walking into someone else's body! Many surprising things have changed since starting androgel. The one that most of you may be interested in is my moderate symptoms with POIS. I have had a number of very strong climaxes since starting the Androgel and I have not experienced ANY bad symptoms after strong climaxes. The first several times I had a strong orgasm, I just knew that something was going to happen. But it never did!

I have no idea if this could work for anyone else with POIS. I can hardly believe that putting on Androgel every 3 days could make such a HUGE difference in my life. I don't understand many aspects of this. So far as I can tell there are no documented cases on PubMed of someone  increasingly their natural level of sex hormones and having it alleviating their gender dysphoria. I have talked with male to female transexuals that were given the opportunity to raise their testosterone levels. For them, it just made their gender dysphoria worse. At this point, I refuse to believe that I am unique but I have also given up on trying to come up with how or why Androgel works for me.

On a side note, Androgel has also greatly reduced my bipolar symptoms. It has reduced it to such a degree that I haven't had any significant instability since starting the Androgel. Others have called this a miracle. I, however, continue to be cautiously optimistic.

If you have any question, feel free to ask away. I'm open and honest. :)
« Last Edit: October 09, 2012, 10:50:42 AM by guy26 »

kurtosis

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Re: My "cure"
« Reply #1 on: October 09, 2012, 11:35:23 AM »
Cool thread. I think much of what's being described as schizophrenia is too high stress hormones, glutamatic acid causing over excitement of brain tissue, interruption of the GABA synthesis from glutamine (at its worst this causes a disease called Stiff Man Syndrome) and reduction in dopamine as it's being used up in creating Norepinephrine, all these things being related.

Scientists are figuring out that "creative" people have a finely tuned level of dopamine receptors in their thalamus. Any lower and they'd be schizophrenic. http://www.sciencedaily.com/releases/2010/05/100518064610.htm
But we've all heard of geniuses who become crazy and perhaps this is merely a reduction in their dopamine level such that their reduced receptors in the thalamus cannot inhibit enough impulses to keep their thinking focussed and coherent.

POIS sufferers may therefore have creative genes with relatives who are involved in engineering, art, writing and other pursuits where imagination and lateral thought are required. POIS sufferers may also have a higher incidence of relatives with schizophrenia.

Testosterone reduces stress and boosts dopamine. That europhoric feeling that you got is common to people who first start supplementing with testosterone.
There are some interesting stories on body building forums about it. T doesn't seem to work for all POIS sufferers but it may be a case of balancing other hormones and GABA levels.

So I wonder if the reason so many of us are in intellectually demanding jobs even though we have POIS is because we have the creative brain but an unfortunate dysregulation that causes us to go into a fight/flight mode whenever we have an orgasm, instead of it being a stress releasing and pleasurable occurrence.

guy26

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Re: My "cure"
« Reply #2 on: October 09, 2012, 12:38:43 PM »
Interesting... I hadn't heard that there may be some connection between individuals with POIS and having a family hereditary history of schizophrenia. In my family, I am not aware of anyone having been diagnosed with schizophrenia. On my paternal side, there is a history of mental illness but it is on the depression and bipolar spectrum.

I don't think euphoria is the right word to describe the feeling when I initially started testosterone therapy. I was intellectually excited and hopeful by the immediate changes that I saw in terms of the gender dysphoria. But this excitement was definitely not a "high" in the usual use of the word. I have been "high" more times than I can count. This is not because of drugs, but because of hypomania and mania. Hypomania and mania can and do occur in those having bipolar. Previously, it was common for me to feel high for no reason at all. Often it would last 5 to 10 minutes and happen every week or so when I wasn't experiencing depression. I would also experience highs that lasted much longer on the order of weeks, but those happened far less frequencently. Since starting testosterone therapy, I haven't felt high and I haven't felt depressed. I would rate my mood has normal and stable. Others have describe my mood and personality as being more laid back and "less intense." Anyway, I just wanted to clarify that point. :)

You mention stress... A few months ago I experienced extreme stress at work. This was the first time that I experienced significant stress after having started testosterone therapy. Stress and bipolar do not mix well! Stress can trigger severe changes in mood. This has been the case for me previously. In the past, it has caused me to become depressed. So when I began to encounter severe stress at work, I was nervous of what would happen. After a couple of weeks I realized that somehow the testosterone was protecting my mood. I could feel it intrinsically, but I can't fully articulate it either. I also noticed that my testosterone level seemed to be lower and I didn't feel quite as much like a guy. After the stress let up, it seemed like my testosterone level went back up and I felt just as strongly like a guy as before the stress. I didn't have my levels measures, so maybe it was just my imagination? However, I have read that cortisol and testosterone production compete against either other. Raising testosterone levels will suppress cortisol production. And raising cortisol levels (which often occurs under stress), will lower testosterone levels. So maybe it wasn't my imagination?

On a side note... On PubMed I found at least one study indicating that individuals suffering from bipolar and severe depression have a much higher likelihood of having a kind of cortisol dysregulation. This is especially the case when there is a strong family history of severe depression and bipolar. A cortisol challenge test had been discovered in the 90's that illuminated this kind of cortisol dysregulation. But because some people that did not have depression or bipolar symptoms, but also had this dysregulation, this test was not viewed as worthwhile. But the study made me wonder? Could it be that I have a kind of cortisol dysregulation, which ultimately allowed my mood to swing wildly over long periods of time? Could raising my testosterone level artificially force cortisol from getting too high? I don't really know. However, there should be some obvious caution about raising testosterone levels in men diagnosed with bipolar. It has the potential to cause mania, so it isn't a panacea. This whole line of reasoning is complete conjecture on my part. I only bring it up as a curiosity.
« Last Edit: October 09, 2012, 02:12:52 PM by guy26 »

kurtosis

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Re: My "cure"
« Reply #3 on: October 09, 2012, 02:04:58 PM »
Cool. There's one schizophrenic in my extended family. Several sufferers here have mentioned schizophrenia like symptoms. Not actually hearing voices but a difficulty in marshalling their own thoughts with crosstalk between different internal trains of thought and external stimuli.

When I said euphoria, I meant a kind of focus or resolve and reduction in stress. No, you're definitely not imagining stress reduction as a benefit of supplemental testosterone. Others have noticed it with supplemental DHEA and pregnenolone also.

Nightingale

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Re: My "cure"
« Reply #4 on: October 09, 2012, 03:15:17 PM »
Wow, so interesting!

I have some similarities to you in that I have been depressive/bipolar for most of my life, and I have experienced dysphoria at the hands of many medications I was put on, especially mood stabilizers and antipsychotics.  Just curious guy26, what medications have worked for you in managing your bipolar?

I too have become manic and hypersexual, and have had my fair share of psychosis.  I can understand how difficult that can be.

Here's a weird thing I havn't mentioned before anywhere, as I thought it had more to do with intolerance of certain meds: I have always identified strongly as a man, and have always had an attraction for women.  But, I have had times in my past, one where I was taking the antipsychotic Geodon, and the other multiple times over about half a year, where I became confused or identified as homosexual. 

The clearest connection was with Geodon.  I had just suffered a psychotic episode after trying to live without any medication.  It took 3 weeks for me to end up in the hospital.  I was tired of Seroquel making me so fatigued, so I requested trying something else and it was Geodon.  Within a few days, I had told my other inpatient friends that I was really gay and it started to feel natural to speak with a lisp (i had a speech impediment when I was young too).  I even called my mother and sister and told them of this new orientation.  But I still felt "not myself" and I switched back to Seroquel.  After a couple days I said to myself "what the F*CK was that?"  I didn't feel gay or feel like lisping at all!

The one that is harder to understand is the 6 month period.  During this time, especially when watching TV I would see a very handsome looking man and this sort of "wires crossed" feeling would occur.  I would just sit there stupified, trying to check if I was really gay or if this was some consequence of chronic use of medications.  It would always pass until the next good looking male character would appear and then I'd have this sort of confusion and anxiety.  Well sometime during that period I decided to test being off Zoloft, my SSRI antidepressant.  Eventually, these confusions disappeared, and I havn't had any issues in more than 7 months.

There, I should I should document that!

kurtosis, you are such an impressive thinker!  From everything I've read trying to help myself out of my mental illness, you are connecting many of the dots out there and a picture of something is coming out.  What, I'm not totally sure yet, but glutamate almost surely has a role to play.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

guy26

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Re: My "cure"
« Reply #5 on: October 09, 2012, 03:18:59 PM »
I'm not for sure if it would be helpful or not to others, but I can list a number of observations since I started testosterone therapy to raise my levels.

Cons:
Before I started testosterone therapy I rarely got pimples--maybe on the order of a few times a year as an adult. Once I started therapy, I got 1 to 2 pimps per week. After 8 months, I now get a pimple once a week to every other week. I hardly ever got them on my face, so I was never that concerned about this problem.

My appetite has increased! it seemed excessive initially. I was always hungry and I felt like my body was hell bent on gaining weight. To adapt, I significantly changed my diet. I cut down on eating meat from twice a day to eating meat 5 times a week. And I switched to eating a large amount of low calorie dense vegetables--ie not corn and not potatoes. Think steamed vegetables such as broccoli. This has allowed me to feel full without eating a lot of calories. Things are better now. Overall my appetite is still larger than it use to be, but it isn't quite as extreme. I have gained 3 to 4 pounds in 8 months. I would have gained a lot more had I not changed my diet.

I take Androgel every 3 days. But sometimes on the day before I take it, I don't feel like a guy or nearly as strongly like a guy. And sometimes on that same day I feel irritated. The next day I take  Androgel and things are back to normal. Overall, I'm not too concerned by this problem. I might mention it to my endocrinologist. Things are going so well overall that I'm afraid of changing it.

Pros:
I feel like a guy! And I feel at peace with who I am! This is amazing and I can hardly believe that it is even possible. And I am no longer driven to risky self destructive behavior.

I relate to other guys! The first time I realized that I related to a guy, I nearly cried. It was a profound moment in life to realize that I was no longer alone even if I was in a convenient store talking to a clerk that I had casually known for several years. I now have a desire to hang with other guys and bond with them? not because I am sexually attracted to them... but because I want to experience male bonding.

When I look into the mirror I see myself as a guy. Initially, it was intellectually shocking to glance at myself in the mirror and see a guy in the reflection. It never bothered me, but it was always surprising. It wasn't until later did I fully understand why these incidents were so intellectually surprising. When I saw myself in the mirror, it simply did not match years worth of accumulated memories. It would be like being a person of Asian decent suddenly seeing themselves literally as an African American in the mirror. Slowly I have adjusted and I don't find it so surprising. Occasionally I'm still taken by surprise, but I smile when it happens.

I feel that my response to stress is far better. In some ways things do not bother me as much and the stress doesn't seem to trigger depression or instability in my mood.

My bipolar symptoms are dramatically better and so far I have not struggled with any mood related problems. I have had a few days that were noticeable off, but that is relatively minor. I feel like I am able to more consistently perform at work without having to deal with extreme emotional states. Acting normal when you are not is a full time job in and of itself.

The minor to moderate symptoms of POIS are gone. I don't have any anxiety about strong climaxes. In fact, I really enjoy them now. :)

Neutral:
Some of my interests have changed, but it is hard to fully appreciate or articulate this point. I finally understand the appeal of sports! I feel a bit of disappointment that I did not discover testosterone therapy earlier in life. I feel like I missed an opportunity to play sports as a teenager and bond with other guys. And I feel like I have needly struggled in life.

To a degree, I feel less emotional and empathetic.

My sex drive has changed, but not a lot. My libido is a little less overall and I get far more spontaneous erections. Sometimes it seems like I'm more sexually active, but I'm not as driven to act on it.

I have always felt that I am 100% gay. Never once have I found a woman to be a turn on. However, somehow... someway... I have found that a very small minority of women are sexually attractive. To be honest this is a bit of a mind f*ck. But it hasn't really bothered me either. It doesn't feel unnatural in terms of the change. I still find guys just as sexually attractive and I still love my other half just as much, so this isn't a plus or minus. To say that I have been surprised by this would be an understatement.

This is all that I can think of at the moment...

guy26

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Re: My "cure"
« Reply #6 on: October 09, 2012, 03:42:07 PM »
Hi Nightingale,

I have not had much if any luck with medications to mediate my bipolar symptoms. I have either found the side effects intolerable or they just made the situation worse. Instead, I have had to rely on a large number of coping mechanisms to function as a normal person and not destroy relationships with family and friends, not to destroy my finances, and to remain employed. It has not been an easy road. My therapist likes to joke with me that he wishes I could teach some of these copying skills to others. I don't have any magic recipe for success. And what works for me may not work for others.

Given your testimonial about Geodon, I find it fascinating that any kind of psychotropic medication could change your sexual orientation... even if it was only for a short duration. I have never heard anyone mention this before. I have read a few documented cases on PubMed where someone transitioning from Male to Female changed sexual orientation once they begun taking estrogen. My understanding is that male sexual attraction is different physiologically than women's sexual attraction. And Men's sexual orientation is assumed to be wired and unchangeable. Given my own experience with a slight change in sexual orientation after increasing testosterone levels, maybe there is more plasticity than is given credit by the medical and scientific community?

I had to chuckle a little at your mention of a lisp. As a gay man, I have never had an urge to talk with a lisp. Some have openly wondered if the gay accent was created out of a need for gay men to identify each other before the days of the Internet. I don't know if I believe that one way or the other, but it is an interesting hypothesis.

kurtosis

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Re: My "cure"
« Reply #7 on: October 09, 2012, 04:36:31 PM »
Kinsey did find there were levels of sexual orientation rather than all straight or all gay. Apologies if that sounds crude but you know what I mean.
What's not clearly understood is the role that hormones play on the orientation of an adult brain. It does seem to be assumed that there's hard wiring but maybe that's not the case. It's a controversial subject but, hey, the whole idea of POIS is controversial so we might as well throw gender fluidity in response to hormones into the mix :)

I'm familiar with the idea of hypersexuality. It's difficult to explain but I found it very very difficult to commit to anybody before my current girlfriend. It wasn't just the POIS. I felt compelled to be unfaithful so I ended relationships or made sure they never got going. Even when I didn't actually have sex with the girl I flirted or went out of my way to create tension. I would often have to leave a bar or nightclub as I could see I was heading towards yet another fling. And this was with POIS. This was knowing how fucked up I'd feel after I did it but somehow the more crazy the situation the better it felt. Also, the bigger the rush, the less POIS I felt.

I now believe this has something to do with incorrect dopamine levels (causing addiction) and hormonal imbalance leading to sexual overexcitement. There was some sweet spot of dopamine buildup that diminished POIS.
I hurt some people in the same way that a drug addict does despite being an otherwise moral person who goes out of their way to help people. I'm not sure if anyone else with POIS has done this but I thought I'd say it seeing as we're all being so honest ;)
Perhaps you're used to reading my posts and thinking I'm somehow clinically detached from this condition and showing off by making these observations but it's not like that at all. To be honest, I've been defined by aspects of this illness and there's about 10 years I wish I could do all over again BUT I think that, in understanding this illness, we'll learn a lot about other illnesses and diseases.

Nightingale

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Re: My "cure"
« Reply #8 on: October 09, 2012, 06:30:11 PM »
I hurt some people in the same way that a drug addict does despite being an otherwise moral person who goes out of their way to help people. I'm not sure if anyone else with POIS has done this but I thought I'd say it seeing as we're all being so honest ;)

Yes, I have done this.

Quote
Perhaps you're used to reading my posts and thinking I'm somehow clinically detached from this condition and showing off by making these observations but it's not like that at all. To be honest, I've been defined by aspects of this illness and there's about 10 years I wish I could do all over again BUT I think that, in understanding this illness, we'll learn a lot about other illnesses and diseases.

You posses some very unique skills, yet you seem like a real human being to me :) 
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Daveman

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Re: My "cure"
« Reply #9 on: October 09, 2012, 07:16:36 PM »
There are imbalances that are surely  agravated by POIS. Maybe even some that produce symptoms
similar to POIS. But I feel that in the area of depression, somehow, we are still in the age of "blood-letting".

I feel that far too many of these cases are treated with very little formal evaluation.

Makes me mad to think that many of our people are worse as a result of the medication.

Yet maybe there are others  that don't even have POIS
who may be missing a proper treatment for
 depression.

Who regulates this field?
WITHOUT RESEARCH THERE WILL BE NO CURE!
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Somewhere in this interaction with Niacin is the answer!

Stef

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Re: My "cure"
« Reply #10 on: October 09, 2012, 09:51:49 PM »
There are imbalances that are surely  agravated by POIS. Maybe even some that produce symptoms
similar to POIS. But I feel that in the area of depression, somehow, we are still in the age of "blood-letting".

I feel that far too many of these cases are treated with very little formal evaluation.

Makes me mad to think that many of our people are worse as a result of the medication.

Yet maybe there are others  that don't even have POIS
who may be missing a proper treatment for
 depression.

Who regulates this field?

Daveman,

This field (of depression) isn't "regulated."  A psychiatrist simply makes the diagnosis based on interviews, sometimes also a questionnaire, and the person's general appearance and demeanor.  A good psychiatrist will inquire about the person's last physical, if he was tested for thyroid levels and testosterone, if overweight or underweight, if there are symptoms of OCD or bi-polar disorder, or other indicators of another disorder.

There are no real regulations for evaluation and treatment of depression, unfortunately. 

When I was a home care visiting nurse, a very popular elementary school in our town had a "nervous breakdown" and was admitted to a psychiatric hospital for two months.  He was medicated with no success, eventually had a seizure.  Finally -- the cause of his odd behavior (getting confused, getting lost) was discovered -- he had an inoperable brain tumor!  It was really a horrible story -- I was completely demoralized by it, as was nearly our entire town. Very, very sad.

That's how it's regulated -- it's not regulated.

And the big problem with having an undiagnosed condition (which POIS is!), is that the docs are clueless, they usually can't help at all, can't find any really abnormal test results, and pronounce the patient "depressed" or having "bi-polar disease" or "psychosis."

This is why the basic research is needed -- POIS has biomarkers.  I'd bet all my money on it!

Did you know that some variants of MS begin with hypersexuality?!

The biomarkers are needed in POIS!

It takes an astute, dedicated and HUMBLE physician to try to put the pieces of the puzzle together.

Stef



[/quote]

Egordon

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Re: My "cure"
« Reply #11 on: October 10, 2012, 12:18:53 AM »
This is fascinating guy26! Welcome and thanks for sharing!!!
POIS since I was about 15. 1.75 years of desens and I'm now about 80% POIS free. Still working through best practices for maintaining my immunity and administering my injections with my doctor. Email me if you have tips or questions!

kurtosis

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Re: My "cure"
« Reply #12 on: October 10, 2012, 04:35:33 AM »
There are imbalances that are surely  agravated by POIS. Maybe even some that produce symptoms
similar to POIS. But I feel that in the area of depression, somehow, we are still in the age of "blood-letting".

I feel that far too many of these cases are treated with very little formal evaluation.

Makes me mad to think that many of our people are worse as a result of the medication.

Yet maybe there are others  that don't even have POIS
who may be missing a proper treatment for
 depression.

Who regulates this field?

Daveman,

This field (of depression) isn't "regulated."  A psychiatrist simply makes the diagnosis based on interviews, sometimes also a questionnaire, and the person's general appearance and demeanor.  A good psychiatrist will inquire about the person's last physical, if he was tested for thyroid levels and testosterone, if overweight or underweight, if there are symptoms of OCD or bi-polar disorder, or other indicators of another disorder.

There are no real regulations for evaluation and treatment of depression, unfortunately. 

When I was a home care visiting nurse, a very popular elementary school in our town had a "nervous breakdown" and was admitted to a psychiatric hospital for two months.  He was medicated with no success, eventually had a seizure.  Finally -- the cause of his odd behavior (getting confused, getting lost) was discovered -- he had an inoperable brain tumor!  It was really a horrible story -- I was completely demoralized by it, as was nearly our entire town. Very, very sad.

That's how it's regulated -- it's not regulated.

And the big problem with having an undiagnosed condition (which POIS is!), is that the docs are clueless, they usually can't help at all, can't find any really abnormal test results, and pronounce the patient "depressed" or having "bi-polar disease" or "psychosis."

This is why the basic research is needed -- POIS has biomarkers.  I'd bet all my money on it!

Did you know that some variants of MS begin with hypersexuality?!

The biomarkers are needed in POIS!

It takes an astute, dedicated and HUMBLE physician to try to put the pieces of the puzzle together.

Stef




I didn't know about the onset of MS being accompanied by hypersexuality. Perhaps it's to do with dopamine levels also as an aunt has MS and she's treated with amantadine which releases dopamine (or so it says on the internet :))

Stef, I have met multiple psychiatrists over the past 20 years. 6 I think (I've lost count) and not a single one has done any hormonal testing or testing of neurotransmitter levels before rushing in to prescribe an SSRI. I have had 2 general doctors saying they couldn't refer me to neurologists as they weren't sure what the symptoms were and didn't want to be embarrassed. So that's doctors not treating a patient because they're embarrassed.
So whatever checks and balances are there for the psychiatric profession in the US, they sure as hell don't exist where I live.

guy26

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Re: My "cure"
« Reply #13 on: October 10, 2012, 09:32:36 AM »
This is why the basic research is needed -- POIS has biomarkers.  I'd bet all my money on it!

Out of curiosity, has there been any interest in working with a company like 23andMe ( https://www.23andme.com ) on trying to find a genetic link for those with POIS? 23AndMe is a company that does genetic testing, helps customers understand basic genetic research as it relates to their DNA results, and performs some of their own genetic research. They have done quite a bit of work on Parkinson's disease. I had my DNA sampled several years ago by them for the novelty of it and to participate in genetic research. They currently charge $300 to sample 730,525(?) SNP's. There has been some money raised for the cause, so it might be practical to get a wide enough sample. I don't really know though. They also allow you to download your RAW genetic data.

Most diseases are influenced by both genetics and environment. How much each factor contributes to the disease greatly depends on the disease itself. I wouldn't be surprised that something like POIS is influenced by both.
« Last Edit: October 10, 2012, 09:37:32 AM by guy26 »

guy26

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Re: My "cure"
« Reply #14 on: October 10, 2012, 10:00:48 AM »
Stef, I have met multiple psychiatrists over the past 20 years. 6 I think (I've lost count) and not a single one has done any hormonal testing or testing of neurotransmitter levels before rushing in to prescribe an SSRI.

As far as hormonal testing and neurotransmitter level testing before prescribing an SSRI for depression... It is common to test thyroid levels before prescribing an anti-depressant. Because hypothyroidism (low thyroid) can easily mimic the symptoms of a depressed person.

However, we are not at a point where there are reliable blood tests that can distinguish whether someone is clinically depressed, has bipolar, or has schizophrenia. There is research into this area, but there hasn't been a lot of success yet. If you have access to medical databases (such as through a university), you might find it illuminating to survey peer reviewed articles using PubMed ( http://www.ncbi.nlm.nih.gov/pubmed ).

In particular, depression is often treated with medication to increase serotonin, norepinephrine, and dopamine levels in the synapsis. This however doesn't imply that a depressed person has deficient neurotransmitter levels. The body and brain are composed of many interlinked systems. If the true cause is in some other system, the problem may be corrected upstream. For example.. in simpler and better understood systems such as the hypothalamic pituitary thyroid axis, problems with either the hypothalamus or pituitary can lead to insufficient levels of the thyroid hormone. The problem can be corrected not by fixing the hypothalamus or pituitary, but administering TSH (thyroid-stimulating hormone) which causes the thyroid to produce T4 (thyroxine). (However in practice with this example, it is more practical to administer the missing thyroid hormone, so that is what is done.) In terms of depression, researchers are finding that SSRI's and other psychotropic drugs that increase certain neurotransmitter levels can reverse the atrophy found in certain areas of the brain of a depressed person. There is some evidence to suggest that the brain atrophy associated with depression is ultimately caused by extended periods of time of elevated levels of cortisol. But you don't see any drugs on the market that target cortisol.

Anyway, I'm not a doctor. And I don't play one on TV. LoL. I just have a casual interest in the things that have plagued me from time to time. :)

I have a lot of sympathy for your situation and share your frustration in dealing with problems that are not well understood.
« Last Edit: October 10, 2012, 10:19:33 AM by guy26 »

kurtosis

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Re: My "cure"
« Reply #15 on: October 10, 2012, 10:05:35 AM »
This is why the basic research is needed -- POIS has biomarkers.  I'd bet all my money on it!

Out of curiosity, has there been any interest in working with a company like 23andMe ( https://www.23andme.com ) on trying to find a genetic link for those with POIS? 23AndMe is a company that does genetic testing, helps customers understand basic genetic research as it relates to their DNA results, and performs some of their own genetic research. They have done quite a bit of work on Parkinson's disease. I had my DNA sampled several years ago by them for the novelty of it and to participate in genetic research. They currently charge $300 to sample 730,525(?) SNP's. There has been some money raised for the cause, so it might be practical to get a wide enough sample. I don't really know though. They also allow you to download your RAW genetic data.

Most diseases are influenced by both genetics and environment. How much each factor contributes to the disease greatly depends on the disease itself. I wouldn't be surprised that something like POIS is influenced by both.

Was going to do it last month but ended up with a very big bill to pay. Long story & I don't want to go into it here :)
However, 23andme could test for some conditions that I'd be really interested in learning about.
- glutamine carboxylase gene problems (the excitotoxicity theory)
- delta 6 desaturase gene problems (may be a precursor of cognitive problems and later alzheimers http://www.ncbi.nlm.nih.gov/pubmed/2129870)
- probability of alzheimers, parkinsons etc.

It's possible that whatever POIS is, some people come to it via an autoimmune issue while some have a genetic predisposition. This is possible with many chemical imbalances in the body. There can be different paths to having the disease or syndrome. But it would be interesting if we all had some genetic similarity. It may just be "creativity" and a finer tolerance to dopamine imbalances coupled with something that's either genetically inherited or occurs due to infection / immunological disturbance that triggers POIS.

I guess I don't really blame psychiatrists who are confused but I get annoyed when people wilfully and ignorantly do a substandard job and, even worse, dismiss their patient's story. I've said this before but a lot of us could cope with an egomaniac like Dr House on the assumption that it would drive him nuts if he couldn't figure out what POIS was. Pleasant but ineffectual doctors are the worst and they still take their fees.

Stef

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Re: My "cure"
« Reply #16 on: October 10, 2012, 04:32:13 PM »
There are imbalances that are surely  agravated by POIS. Maybe even some that produce symptoms
similar to POIS. But I feel that in the area of depression, somehow, we are still in the age of "blood-letting".

I feel that far too many of these cases are treated with very little formal evaluation.

Makes me mad to think that many of our people are worse as a result of the medication.

Yet maybe there are others  that don't even have POIS
who may be missing a proper treatment for
 depression.

Who regulates this field?

Daveman,

This field (of depression) isn't "regulated."  A psychiatrist simply makes the diagnosis based on interviews, sometimes also a questionnaire, and the person's general appearance and demeanor.  A good psychiatrist will inquire about the person's last physical, if he was tested for thyroid levels and testosterone, if overweight or underweight, if there are symptoms of OCD or bi-polar disorder, or other indicators of another disorder.

There are no real regulations for evaluation and treatment of depression, unfortunately. 

When I was a home care visiting nurse, a very popular elementary school in our town had a "nervous breakdown" and was admitted to a psychiatric hospital for two months.  He was medicated with no success, eventually had a seizure.  Finally -- the cause of his odd behavior (getting confused, getting lost) was discovered -- he had an inoperable brain tumor!  It was really a horrible story -- I was completely demoralized by it, as was nearly our entire town. Very, very sad.

That's how it's regulated -- it's not regulated.

And the big problem with having an undiagnosed condition (which POIS is!), is that the docs are clueless, they usually can't help at all, can't find any really abnormal test results, and pronounce the patient "depressed" or having "bi-polar disease" or "psychosis."

This is why the basic research is needed -- POIS has biomarkers.  I'd bet all my money on it!

Did you know that some variants of MS begin with hypersexuality?!

The biomarkers are needed in POIS!

It takes an astute, dedicated and HUMBLE physician to try to put the pieces of the puzzle together.

Stef




I didn't know about the onset of MS being accompanied by hypersexuality. Perhaps it's to do with dopamine levels also as an aunt has MS and she's treated with amantadine which releases dopamine (or so it says on the internet :))

Stef, I have met multiple psychiatrists over the past 20 years. 6 I think (I've lost count) and not a single one has done any hormonal testing or testing of neurotransmitter levels before rushing in to prescribe an SSRI. I have had 2 general doctors saying they couldn't refer me to neurologists as they weren't sure what the symptoms were and didn't want to be embarrassed. So that's doctors not treating a patient because they're embarrassed.
So whatever checks and balances are there for the psychiatric profession in the US, they sure as hell don't exist where I live.

Hi, kurtosis!

Yes -- some variants of MS present with hypersexuality. It's very, very sad -- the individual feels intense shame and blames him/herself for being "sex-crazed" and avoids seeking treatment.  The behavior can really get out of control and be very inappropriate. Ultimately, someone (a family member or close friend) will tell the person that their behavior is bizarre and that they must see a doctor.

MS is not so easy to diagnose early on.  But sudden onset of hypersexuality often means that an organic (i.e. not emotional) problem is occurring -- and nowadays, MS is one of the conditions to rule out when this occurs.

As an aside, I'm not quite sure if or how these neurotransmitters can be measured -- other than doing something radical like a brain biopsy. (Does anyone here know how/if these neurotransmitter levels are tested?)  It might be that there's a presumption of a neurotransmitter dysfunction when depression occurs -- but it's all guess work.  The doc prescribes a SSRI, for example, based on symptoms.  But it might not work after several weeks or may even make the person feel worse, very quickly -- so another med is tried.  It's a grueling routine, very drawn out, and often there's no med that works for what is basic, ordinary, miserable depression -- without any co-morbidities.

But hormone levels (i.e. TSH, T3, testosteone, free testosterone) -- those are the standard of care when someone comes in depressed. In women, estrogen levels are measured. So a psychiatrist needs to ask about the last time these were tested, and should ask the person to get the results to him/her.

One other item that you might find interesting -- the drug Sinemet (combination of carbidopa and levodopa) -- used to treat Parkinson's disease -- can also cause a type of hypersexuality that is similar to that of some MS patients.  But -- when someone has serious Parkinson's disease, their movement becomes stiff and halted -- so there's no way to self-release.

I worked with the Visiting Nurse Association when Sinemet first became available.  One of my patients, an elderly man, was doing very well on it (no hypersexuality) -- but because it was a new med, I had to read up on it -- so that I'd be able to ask about or observe potential negative side-effects.  This gentleman did very well on it.

BUT -- when I later worked in primary care, an elderly, frail woman, mid-80-years old) with severe Parkinson's disease came in for a physical.  It was excruciating to deal with this poor soul because everything was VERY SLOW and HALTED -- and I was constantly rushed in that practice -- it was very busy there -- but I couldn't move quickly with her.

Cutting to the chase, I finally got out of the room, the doc I worked with -- who is wonderful and very patient -- went in, and spent ~45 minutes with her.  He was totally exasperated when he finally got out of there --because it was so difficult to deal with this poor woman. (Usually patients in this condition have family accompany them, making it easier for everyone involved. -- this woman had no family.)

So -- this doc came over to me and said, "You know what she told me? She thinks all she needs is an orgasm!!!  An orgasm!!!"  He was agitated and aggravated -- it's difficult to describe why that happens, but some very slow patients can drive you crazy!

This revelation immediately clicked with me.  I looked on her medication list -- and sure enough -- SINEMET!  Prescribed by a neurologist, appropriately.

The doc had no knowledge about this rare but definite side-effect that can accompany Sinemet usage. (And I guarantee that patients aren't warned about this -- even to this day!)

I told him, he looked it up, there it was in black and white.  He called her neurologist -- her Sinemet dose was lowered -- and in just a few days she was no longer TORTURED by this sense of needing an orgasm.

Neurotransmitters are powerful chemicals with really strong, potentially horrible side-effects when they're tinkered with!!

Stef

kurtosis

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Re: My "cure"
« Reply #17 on: October 11, 2012, 05:01:07 AM »
Urine tests are pretty crude. Most neurologists are skeptical BUT (and it's a very important but) variation in urine levels of neurotransmitters has been found in people treated with various ADHD and parkinsons drugs.

Dutton, J., Copeland, L. G., Playfer, J. R., and Roberts, N. B. Measuring L-dopa in plasma and urine to monitor therapy of elderly patients with Parkinson disease treated with L-dopa and a dopa decarboxylase inhibitor. (1993) Clin.Chem. 39(4): 629-634

and
Zametkin, A. J., Karoum, F., Linnoila, M., Rapoport, J. L., Brown, G. L., Chuang, L. W., and Wyatt, R. J. Stimulants, urinary catecholamines, and indoleamines in hyperactivity. A comparison of methylphenidate and dextroamphetamine. (1985) Arch.Gen.Psychiatry. 42(3): 251-255

and others...

So it's the difficulty in determining a baseline rather than dismissing the idea as worthless. Some doctors would say they're worthless but that's more a reaction against some of the people who use them to sell supplements (or even worse homeopathy) than something backed up by facts. In all professions, people can score points by attacking some group of perceived quacks. So "alternative medicine" is a really broad group encompassing everything from people who are very science driven but have an unusual take (the orthomolecular medical researchers) to those who believe they can make people better by warding off bad spirits. It's a bug bear of mine that conventional medicine likes to lump everyone who's not "orthodox" together as if double Nobel prize winner Linus Pauling would have had much in common with a witch doctor :D

It seems the urine test is good at spotting changes in individual patients levels of neurotransmitters so may be useful in looking at what's happening after an O. It's also useful in identifying problems in a very general sense. i.e. don't expect linear correlations between urine output levels and fluctuations in the Central Nervous System.

Technologies to look at neurotransmitters in the CNS are expensive. As far as I know the Mayo Clinic has some system. It's also possible to PET scan catecholamine levels using various tracers. See http://10thintcatsymp.org/presentations/wed/1115AM_CHAPEL_9.12_SCHEININ.pdf
from the brilliantly and informatively titled 10th International Conference on Catecholamines :)


Jon

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Re: My "cure"
« Reply #18 on: October 13, 2012, 02:34:12 PM »
Hey guys. This is a very interesting topic. And as Kurtosis and others know, I can personally relate to many things discussed here. I am a 25 year old trying to conquer my symptoms and get involved with my family's business. My situation has not been well as of late and it took me days to write this but I felt that I needed to write on this topic as it relates to me quite a bit.

I've had many posts on here.. For those who don't know my symptoms first started when I was 16, I felt a sudden dullness and weakening (Like an engine turned off in my head) at orgasm. I knew something was wrong right away. At first I thought the feelings would pass but they turned out to be consistent and I have not since rid them. I soon after developed a POIS on top of these constant symptoms, So when I would have an orgasm I would be in POIS for about a week until I recovered only to reach my constant symptoms. The thing is my constant symptoms got worse over time because or orgasms.

By the time I was 20 my constant physical and mental symptoms had declined so far that I left school and work. I was limiting myself to less than 1 orgasm a month. I had trouble getting out of bed at all, I could sleep hours and not feel rested, and when I did I experienced hot flashes and a very run down feeling all day. I felt my best late at night. My physical symptoms were many and present including eye burning/clarity/sensitivity, light tremors in hands and mouth, fatigue, groin/prostate discomfort, cardiovascular, digestive and others. I shy away from sunlight and other elements because my body felt to weak to enjoy them, But mental symptoms began to take over. On top of the dullness and not feeling fully conscious I began to experience schizophrenia like symptoms. It felt like thoughts and speech did not coincide with the stimuli around me, I was thinking, speaking, and acting much faster than I needed to in any given situation. I felt like there was a time limit on everything. I have a talkative and friendly personality, For some unconscious reason I found myself avoiding anything that involved interpersonal energy. I had an unexplained paranoia around people and would often freeze up. Speaking became a chore and I often found myself trying to make my words sound relevant. Holding a conversation was impossible at times. It was like struggling to live within myself and watching all the stimuli of the world go right over my head, People and sounds became more alarming than anything.

I saw every kind of doctor, tons of appointments. Neurologists, endocrinologists, urologists, neuroendocrine, psychiatrists. Tons of all kind of testing. I was misdiagnosed with everything from thyroid to anxiety to schizophrenia. I didn't give in as I have always known that the source of my issue is a result of that first instance when I was 16. I knew that the technology wasn't there to prove it and I was on my own.

I then was lucky enough to find this forum. Again I would like to thank everyone who has taken part of this forum. It is a great thing.

Fenugreek and garlic did not work for me. I started to take a multivitamin and noticed a little more energy. Then about a year ago I took niacin before orgasm and I noticed a physical and mental boost, this allowed me to get around a little more but I could still not work or go to school effectively. About 6 months ago Kurtosis shared with us his first treatment regimen. I took niacin before orgasm and vitamin c, fish oil, and spirulina immediately afterwards. The first time I took it I felt alive for the first time in 8 years. I felt the air that I was breathing go through my body, I felt alert and positive, and my emotions were somewhat relevant to conversations I was having. I could go out and keep my head up as I was in tune with my surrounding and I could comprehend them. I also had an abnormal boost of perseverance, almost like I was looking to do errands and chores. I have always been the type to feel like i can do anything I put my mind to but I was on another level at this point. I was then having an orgasm a week or so and enjoying myself because I did not feel much POIS at all. (When I have orgasms I do not use my hands as much as I want to, the less touching and pleasure, the less symptoms for some reason. Sometimes I do not use my hands until the moment of climax.)

After about 4 months of this (2 months ago) my symptoms began to creep back in. This boost to look for tasks and complete work, although pleasant, tapered down after a couple of months. It did seem normal and I often wonder if I have hurt myself taking the supplementation immediately after orgasm. Besides that, I was still well enough to be productive with work and school and such. Its funny because wet dreams sometimes improve my current symptoms when they used to hurt it. Why I'm not sure. Anyway, I began to spread out my orgasm again because I felt the supplementation working less and less with each orgasm. About a month ago I had one and used the supplementation but I started to feel the groin pain and schizophrenia stuff again, not quite as bad as before though. Figuring that I needed a break and that I might have just built a tolerance to the supplements, I waited about a month to have an orgasm to try to get a positive reaction again (Had it last week).

I always have my orgasm right before bed. And in the morning (The worst part of my POIS) I usually know how my symptoms will turn out. I had the niacin, had the orgasm, then took my supplements. As usual the train of thought and mentality that I had before the orgasm was wiped out and I started a completely new train of thought. This time I had a very strange reaction. I have shivered before but this time my body was literally shaking all night and I was freezing in bed. Also a few hours into the night below my groin area just below the abdomen felt swollen and blown up. I felt like I was going to pass out in bed, not a light headed feeling. More like my brain was going to cut me off of consciousness. I got up to go to the bathroom and I was walking but I couldn't fully feel my leg movements, it was very strange and hard to explain. When I went to the bathroom it was like my bladder was ready to explode or something, the urine was semi spraying out. I had never experienced any of this before, I was only familiar with shivering but never as severe as this was.
 
To somewhat conclude, It is clear to me that all my symptoms are a result of POIS related issues. Schizophrenia is not an illness that can be healed by taking supplementation otherwise it would be recognized as such. How this all started with a sudden onset at orgasm years ago I may never know, but I did experience a majority of relief with the supplementation suggested by Kurtosis which tells me that this is a physical issue. Taking these supplements literally helped with ALL my symptoms guys and as you just read, they are wide spread throughout the body and many. For example, how my groin discomfort and issues tie in I have no idea. Supplementation does not work for me other than during or around orgasm, its like this is the time capsule for me when my body is vulnerable to change for the better or worse.

I do sometimes wonder if taking the supplementation direct after orgasm has done damage to me. If it has I think my body will be able to recover, I certainly hope so at least. In any case I have had no choice as this is what i had to do to get relief and as you know know we can definitely feel desperate at times.

As for creativity and such, I have always been a pretty creative person. With strong beliefs and confidence. When I was most sick I was thinking about things differently, in a very creative way. As I improved and got more active some creativity went away. I have lost a lot of that, maybe more than I should have. I certainly hope that this cannot be attested by misusing these supplements as I just explained. But I think all in all POIS definitely has an effect on creativity.

I recently got prescribed Testosterone Gel (1%) recently. I highly doubt this will be a cure for me since my symptoms are more severe than many but I have nothing to lose. I'm a 25 year old with big dreams just trying to keep my health and mentality.

I have gone to this forum a few times before for help but that is what they are there for I guess. I know you are all individually dealing with your own endeavors and as I've said before, If anybody needs somebody to talk to I am here. I do plan to admire my pledge and donate $1,000 when I have the money. I just hope that my case can be presented with the others.

I am not sure what to do guys. I am at a crossroads in my life and I cannot explain how bad I need my health.

Demo, Daveman, Nordnurse and others, I would like to thank you for your profuse dedication and time. I would like to personally thank Kurtosis for his contributions to the forums. You guys have gotten us to this point. I appreciate your efforts.

I apologize for the long message. Thank you all for your time,

Jon.
My cognitive symptoms started suddenly during an orgasm when I was 16. I then developed my POIS and cognitive/physical symptoms became very severe. Had to leave work and school. This year I had 60% success with regimen. Recently the symptoms have gotten worse again. Let's help each other.

Daveman

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Re: My "cure"
« Reply #19 on: October 13, 2012, 03:12:11 PM »
Thanks for sharing Jon. I'm sure many of us can relate!!

It's not the first time that success stories have slowly (other times mier quickly) faded away.

I know that I have had ups and downs with niacin, and in the end, it's been a matter of trying to better understand how it is working.

Sometimes I have to take more, sometimes less, and sometimes I know I can't because it won't work. But I still feel I am practically POIS free,
a constant balance between more and less and understanding what I am doing. (Or trying to)

I don't think that you have done any damage to yourself, it seems you are taking the vitamin complex only around the orgasm. The B vitamins
CAN be dangerous in high and constant doses. But not taken so infrequently.

Also, I'm not sure that you have "developed a tolerance". It's probably more like the details of how and why it works staill aren't all that clear (at least to us lay-people)
and sometimes the duckies line up and sometimes they don't, and it's difficult to see these slimy duckies. Could be subtle weather changes or changes in
diet that you aren't really aware of or things like MSG or additives that exaggerate POIS, again not something that we are really aware of.

Fall is coming in the North (I'm in the south) I am always worse in winter! Weather systems do a Spanish Flaminco on my body, increase inflammation, a ton of stuff.

Speaking of inflammation!  The swelling in the groin (and with me, strong itching) is much worse with retrograde ejaculation. If I have weak orgasms or penetration is poor (during intercourse), I don't expel all of "the load" cleanly and I can be sure I will have more swelling and itching and POIS.

So there are just too many factors!! Hmm, good reason for research!

Anyways, thanks for your post. I'm sure it reflects in a lot of us!!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!