Wednesday, September 24, 2014

Episode 45: On Being a Woman in the Face of Debilitating Disease, OR That Pesky Hypothalamus!

I'm in trouble with one of my sons again. That is, I think I am, though I do tend to be slightly paranoid about his feelings for me since we don't get to see each other very often.

And probably rightly so--the being in trouble, I mean. I used a rather fun, risque photo of myself to illustrate a point on one of the episodes of this show, and apparently that made my 30-year-old son feel icky, especially after some of his friends, who are also my friends on Facebook, apparently razzed him about it. Now, my son is thirty years old--I'm not talking about a child here.

I didn't think the photo was even close to pornographic, but I can understand his discomfort. But nowadays body parts are displayed all over the Web and in text messages ad nauseum, so I don't think my playful photo--uploaded simply to make a rhetorical point, and it took me a year to get the guts to do it, but I made the sacrifice for my art--is really that scandalous. One must be edgy these days, mustn't one?

After all, said squeamish son DID do the lead singing and guitar playing in a punk band all night in one of the bars in the town where I live wearing nothing but a DIAPER, so it's not as if he leads a life of modesty!

Anyway, hopefully, I'm imagining all that. I love my kids dearly and don't like any hint of being on the outs with either of them.

Yet I still feel the need to write about being a woman--a relatively young and sexually active (though less and less so of both)--woman who is coming (no pun intended) to grips with the effects of chronic disease on her sex life.

The effect, in short, is numbing--a metaphorical cold shower on the hormones and neurotransmitters responsible for sexual arousal and pleasure. This, at least, appears to be the culprit in my case, having recently been diagnosed by my neurologist with progressive (a nice way of saying "degenerative") neuromuscular disease.

My faithful following (of statistical vampire sites, at least) knows that I've been convinced for some time that my hypothalamus is going wacko.

Yes, sports fans, my HYPOTHALAMUS, of all things, is failing me.

I've been convinced of this for some time, even before my neurologist diagnosed me with this neuromuscular disease of unknown etiology, still to be determined.

My money is on myotonic dystrophy based on a reasoned review of my medical history and the MD disease profile. Not tangential is recent proof that myotonic dystrophy's effects are caused by imbalances in, you guessed it, that cute little hypothalamus.

It's time for all of us to become friends with our hypothalamuses!  Now, there's a great word.  Or should it be "hypothalami"?

So, what is a hypothalamus anyway? 

Well, you have one, or you wouldn't be reading this right now. Or doing anything else. Like breathing, for instance.


You may have heard or read that the pituitary gland is the command center of the brain. Indeed, the impetus (impetuses? impetusi?) for most of our autonomic functions (meaning they happen without our conscious input) IS funneled through the pituitary.

However, those impulses are, for the most part, first manufactured in the hypothalamus, a tiny area in the brain with a very big job. According to Healthline, the hypothalamus is responsible for producing hormones, and we all know how important hormones are to sex drive, among other functions of the body. Make that all functions of the body.

If the neurotransmitter dopamine is, as Vaughan Bell is attributed as saying in Slate, the "Kim Kardashian of molecules," the hypothalamus is the media circus that produces the Kim Kardashians and other sex objects in our culture. In other words, it's the big kahuna. Dopamine is one of the chemicals produced in the lateral hypothalamus.

My suspicions about my hypothalamus began a couple of years ago when some of the other drives regulated by these hypothalamus-produced hormones began to go wacky on me. These hormones "govern body temperature, thirst, hunger, sleep, circadian rhythm, moods, sex drive, and the release of other hormones in the body" (Healthline, )http://www.healthline.com/human-body-maps/hypothalamus). 

If you know me at all, you know my circadian rhythm has been reversed for years. I have tested positive for several sleep disorders, including idiopathic hypersomnia--a condition mostly attributed to "central" (i.e., neurological) defects.

My weight goes up and down with my varied appetite--for months, I'll rarely get hungry or eat properly and lose a lot of weight, and then once in a while I am ravenous and gain it all back, only to begin the cycle again.

My temperature has been off by about 20 degrees in comparison to others--I am always so much warmer than everyone else. And sweat? Fuhget about it! Also controlled in the hypothalamus, my sweating was Out of Control for many years and then suddenly reverted to what I'd now consider normal. No clear reason for my hyper-sweating was ever given me by my doctors. Neurological problems can be baffling, even for the professionals.

The drive to breathe is also regulated in the hypothalamus. A malfunctioning hypothalamus afflicts the poor little babies who die of Sudden Infant Death Syndrome (SIDS)--these deaths, according to Reid and Tervit 1999, are due to a "hypothalamic failure to sense elevated blood pyrogens." In other words, signals to breathe.

Recent research has also found that the hormones secreted (or rather, not secreted in adequate amounts) by the hypothalamus are responsible for narcolepsy and likely other sleep disorders, including my idiopathic hypersomnolence. Idiopathic, by the way, simply means docs don't know what's causing it, similar to the "essential" in "essential hypertension." Quite frequently, these idiopathic and essential disorders end up being caused by brain pathologies--and I've suspected my brain of slacking on the job for some time.

A not-too-comfortable realization for someone who's always prided herself on her intelligence and now realizes white matter lesions are turning her brain into a sieve. And it seems almost prima facie that those lesions are schmucking with my hypothalamus.

Thanks to NIH physicians who oversaw a clinical study on adrenal neoplasms in which I participated in 2008, I know my hypothalamus is screwed up in at least one medically verified way. The itty-bitty but giant brain nugget is not properly regulating my release of CRH, a hormone that tells the pituitary to produce another hormone that, in turn, tells the adrenal gland to produce aldosterone.

In my case, the message is skewed, and too much aldosterone is produced. And too much aldosterone messes up one's equilibrium, particularly the body's regulation of sodium and potassium, two minerals responsible for basic bodily processes. Screw around with basics like that, and you're screwed.

I was finally diagnosed with my primary hyperaldosteronism after thirteen years of out-of-control hypertension (despite years of trial and error with various medication cocktails) in 2007 by Dr. Roberto Salvatori at Johns Hopkins Medical Center. The diagnosis was confirmed by National Institutes of Health (NIH) during the clinical study referred to earlier, overseen by Dr. Constantine Stratakis.

I underwent an adrenal vein sampling procedure at NIH that determined both of my adrenals were over-producing aldosterone, and I have been on the proper medication ever since. If only one of the adrenals had been defective, surgery to remove it would have essentially cured my condition, and medications would not have been required.

I'm not sure which outcome is better, but Spironolactone does have some unpleasant side effects for some users. I feel so bad for so many reasons that I don't know whether the Spironolactone bothers me or not! I do know it keeps my hypertension mostly under control, and I no longer have to take those potassium horse pills, so in my book it's worth any discomfort it may cause.

My doctors at NIH explained my defective hormonal pathway, often called the pituitary-adrenal gland axis, to me during my clinical trial, which first kindled my interest in that cute little brain nugget slash powerhouse.

And the symptoms I keep accumulating nearly all share one likely cause: The control center for their regulation is housed in that same cute little--bastard!--hypothalamus. Maintaining equilibrium in the body is the hypothalamus's role. No one wants one's basic bodily functions disequilibriated, to coin a word.

What the docs at NIH didn't tell me, and what I know now, is that another thing the hypothalamus can "disequilibriate" is one's sex drive.

It helps, just a little, to know that my sudden and disturbing lack of sexual feelings (other than a general, physical adoration of my Honey--just without the tingling cum nastiness of sexual desire, so to speak) is due not to a personal failure but to this same damned pesky bit of brain tissue.

My lack of sexual desire is NO reflection on the hotness of said Honey. He stops my breath with his beauty, and I kid you not. As I wrote in an earlier episode, though, sex's effect on me these days of truly stopping my breath also factors in to my sexual resistance, but having done a little research I'm now convinced the major culprit is, in fact, well, you know what.

"The hypothalamus screams, 'Have sex now!'" 

The above quotation comes from "Sexual Dysfunction and Sexual Performance" in Brain Injury Online at http://www.brain-injury-online.com/sexual-dysfunction-and-sexual-performance.html.

In other words, as I said, it's time to make friends with our hypothalami. The article goes on to state:
Another problem affecting sexual desire is the inability to concentrate. Short term memory problems are very common among brain injury victims, and this includes attention span. Shorter attention spans affect the ability to concentrate. Lack of sleep and the inability to relax are other issues that affect sexual desire.
Yet where do problems such as these originate? Quite often, once again, in the H word, whether the damage is caused by traumatic brain injury, a degenerative health condition, or some other physical cause.

I've gathered a few citations and abstracts to help convince viewers that we--and our partners--need to understand the role of the hypothalamus (and other bodily processes) on sex drive. This is especially important for us sufferers of chronic disease, male or female, to explain why sometimes we just don't feel like we can, er, get it up.

Colored MRI Scan Of Human Brain.
This MRI scan image shows the areas of the brain
involved in lust, according to a recent article in Slate
(link provided below)
In a study on male sexuality, researchers found that individual differences in deep sexual identity "are strongly correlated with blood flow to the bilaterial hypothalamus, a . . . brain region deeply implicated in instinctual drives including reproduction" (Brunetti, et al., Abstract).

Interesting that it is blood flow--oxygen, actually--that activates the hypothalamus's sexual signals, as found in another medical article, and I continue having issues with lack of oxygen in my blood and, apparently, with blood flow itself. My hypothalamus is oxygen deprived!

The polycythemia that began in 2010 still has no known cause despite a thorough Hopkins evaluation (that did not, however, include neurological tests), and I'd argue it's due to a lack of blood flow and oxygen to my cells, which is why my body is hyper-producing oxygenated blood cells (hemoglobin) at an increased rate.

But what the hell do I know, as the neuromuscular "expert" at NIH I saw on July 9 made so very clear to me. (See Episode 41 and weep for all patients with the slightest insight as to their own bodily processes--and pray you don't find yourself Down the Rabbit Hole of today's health care system).

However, getting back to the medical literature on sexual response, a similar study--in which erotic films were shown to participants and their brain activity measured by fMRI--conducted on both males and females--suggested that females' sexual arousal is less governed by the hypothalamus than is males'. The authors suggest females may have a different physical pathway that results in sexual desire.

I'm not sure I buy this. Maybe the females' lack of desire was due not to a difference in such a basic human process but by feeling more inhibited than the male subjects did in viewing erotic films while wired up for sound or, rather, horniness, with a whole bunch of pointy-headed scientists watching with bated breath.

Heck, we all know that women tend to warm up more slowly than men! That doesn't mean we give their hypothalami a pass. This is new research, so conclusions are tentative.  Therefore, based on a scientific sample of one human being--ME--my guess is that the hypothalamus plays a significant role in females as well as males when it comes to sexual desire.

Regardless, knowing that sexual desire is created and mediated by a simple chemical process in the body may help avoid many hurt feelings and misunderstandings when we can't love our partners the way they want us to. It isn't that we chronic diseasers don't want to show them that love; quite often, it seems, our bodies simply do not provide the necessary, er, lubrication to facilitate the process.

Blame the chemicals, or lack thereof! Blame the hypothalamus!

But don't blame each other, or ourselves. Our bodies are not working right in so many areas--why would our sex lives be immune from the damage?

Before I list these articles, another definition might help. The Functional Magnetic Resonance    ("fMRI") test came online in relatively recent years. That's why science knows so much more about neurological processes than it did a mere two decades ago. This amazing tool allows neurologists to actually see the regions in the brain affected when animals or humans perform certain tasks or are subjected to certain conditions. The equipment's readout shows the areas of the brain being affected, with colors "lighting up" cells when they are active, as in the photo accompanying this episode.

It is thanks to fMRI that we know so much about the hypothalamus and its very basic effects on our day-to-day existence. Now, our brilliant researchers need to find a way to fix the damned thing when it goes bad!

Take everything away, but don't take away our sex lives, for Petey's sake!

Further reading:

Brunetti, M., et al. (2008, 20 Jun.) Hypothalamus, sexual arousal and psychosexual identity in human males: A functional magnetic resonance imaging study. European Journal of Neuroscience 27(11):2922-7. DOI: 10.1111/j.1460-9568.2008.06241.x.  Abstract: http://www.ncbi.nlm.nih.gov/pubmed/18588532.

Eisensehr, I., et al. Hypersomnia associated with bilateral posterior hypothalamic lesion. European Neurology 49:169-172. https://epub.ub.uni-muenchen.de/16805/1/10_1159_000069088.pdf 
--Indicates that wakefulness is controlled in the posterior hypothalamus--as you know, I suffer from hypersomnolence confirmed on MSLT (a sleep test).


Mandal, Ananya. Dopamine functions. (2014, 14 Jan.) Medical News. http://www.news-medical.net/health/Dopamine-Functions.aspx

Pituitary Gland and Hypothalamus.  Upright-Health.com.  Excellent resource on these two little vital bits of brain tissue.

Reid, GM, and H. Tervit. 1999. Sudden infant death syndrome: hypothalamic failure to sense elevated blood pyrogens. Medical Hypotheses Jun 52(6):569-75.  http://www.ncbi.nlm.nih.gov/pubmed/10459840

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