My Disordered Sleeping Life

Detail from Henry Fuseli's The Nightmare, 1781

My sleeping life is very active.  Last night I woke myself up yelling at my son for not helping pick up soil that had been spilled when a couple of houseplants tipped over.  The night before I woke up screaming at the dog because he was attacking one of my dream chickens.  Almost every night I yell in my sleep or engage in long soliloquies.  Sometimes the dream talking is amusing:  I dream I'm back in the classroom and I lecture on some random topic, or go off on something related to my research or activism in social justice.  I've woken myself up explaining the meaning of hegemony, for example, or ranting about objectifying women or denying youth rights.  

Some nights I act out parts of my dreams: I sit up and talk, hit at things I see in my dreams, or fling my arms around and knock things off the bedside table.  I also have periodic limb movements where my fingers or toes or sometimes my whole torso will flex and relax repeatedly.  Less often, I have restless legs that make sleeping difficult or impossible.  On other occasions, I get an extremely sharp and severe pain at the base of my tongue that wakes me up or I bite down hard on the inside of my cheek and wake myself up.  And I sometimes awaken suddenly in response to what seems like an electrical explosion or a strike by a bolt of lightning that happens inside my head. 

My nightmares and night talking began when I was pretty young. The other things have developed and worsened over time.  Some of them are perfectly normal: the explosions in my head for example, are known as exploding head syndrome. Many people have this and it's not indicative of anything being wrong.  Restless leg syndrome is also pretty common and not problematic unless it disturbs daytime functioning.  The other things are not so normal.  I worry about their causes and what they might indicate about my future health.  Bodily movement during rem sleep is decidedly not normal.  Generally we're incapable of movement during rem sleep; beyond our autonomic functions, we're essentially paralyzed.  If you're not paralyzed during rem sleep, if you are able to act out parts of your dreams, you have what's known as REM Sleep Behavior Disorder.  According to emedicine health,

"RBD is characterized by the acting out of dreams that are vivid, intense, and sometimes violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing."  

That's me to a tee.  And according to emedicine health:

RBD may occur in association with various degenerative neurological conditions such as Parkinson disease, multisystem atrophy, diffuse Lewy body dementia,and Shy-Drager syndrome. . . RBD often precedes the development of these neurodegenerative diseases by several years. In one study, 38% of patients diagnosed with RBD subsequently developed Parkinson disease within an average time of 12-13 years from the onset of RBD symptoms.

And, from Science Daily,

Rapid-eye-movement sleep behavior disorder (RBD) is not just a precursor but also a critical warning sign of neurodegeneration that can lead to brain disease," says associate professor and lead author Dr. John Peever. "In fact, as many as 80 to 90 per cent of people with RBD will develop a brain disease."

So, yeah, crap.  I already know that I have lesions scattered throughout the white matter of my brain but so far MRIs have not shown any progression and neurologists have not definitely diagnosed me with either multiple sclerosis or any other progressive, degenerative brain disorder.  I have demyelination of the central nervous system, but there's no evidence that it's progressive or that there's an active disease process.  Fingers crossed that nothing new will develop (I have mris approximately every six months), that my sleep symptoms aren't indicators of degeneration to come.

But now that we're traveling, we face a more immediate problem: we're pretty much sleeping in public, given the proximity of sites in these rv campgrounds, and I'm afraid that my sleeping behaviors will get us in trouble with the people around us.  I am extremely violent when I yell in my sleep.  I'm aggressive in a way I never am when I'm awake.  For example, a few nights ago I woke up screaming at the top of my lungs, "If you attack me, I'll fucking kill you!"  That one worried my husband (and me):  what if one of our neighbors in the rv park hears that and calls the police?  Lately, I've been yelling so loudly that I wake from the dream with my throat feeling sore. The things I yell, well, let's just say that they consist of strings of angry, profane words. 

Seriously, though, what should we do?  Post a sign on a trailer door that says, "Intense dreaming in progress"?  Or should we introduce ourselves to our rv neighbors and warn them that they might hear me yelling nasty things in my sleep at night? 

On a separate note, I puzzle about the meaning of my disordered sleep. It's difficult to understand the nature and causes of human behavior sometimes.  In this context, for example:  Is it correct to think about my sleep behaviors as being trauma-induced, that is, behavior patterns that were caused by past abuse-related events in my life?  I've been diagnosed with ptsd by a psychiatrist, and ptsd is often associated with recurring nightmares and certain behavior patterns during waking life. 

Or  should I instead think about those behaviors as a consequence of a malfunctioning immune system, a genetic susceptibility coupled with an encounter with a virus or bacteria during early childhood, that ultimately led to the development of lesions in my brain?

The first way of thinking about the nature of my disorder would have me engage in cognitive behavioral therapy as a way of changing my ingrained patterns of thinking and behaving.  The second way of thinking would prescribe immunosuppressants to ensure that no further damage is done by an overactive immune system. 

Likely, though, my sleep disorders can be understood through some combination of these two ways of thinking.  We know that trauma, especially during key developmental periods of childhood, can have physical effects on the human brain.  And researchers believe that immune disorders associated with brain changes are the result of several things interacting: genetic susceptibility, a viral or bacterial infection, and an environmental stressor of some sort (see for example, http://www.nejm.org/doi/full/10.1056/NEJMra1100030 and http://www.ncbi.nlm.nih.gov/pubmed/18190880).  When these things combine, the immune system kicks into gear to fight the infection and then, long after the infection has been vanquished, continues to fight, now against essential components of the host, such as the nerves in the brain, connective tissue, or proteins in the blood.  

What freaks me out when I think about it, though, is the inseparability of the physical and the psychological, the body and the mind.  It's such an engrained cultural habit to think of these as two separate, different-in-kind, things.  But this is not at all the case.  What we think and experience influence our physical being, and vice versa.  When my psychiatrist teaches me new ways of thinking using cognitive behavioral therapy and when I begin to habitually practice those new ways of thinking and feeling, my brain changes.  And when I take certain drugs that my rheumatologist, psychiatrist, and neurologist prescribe to change my immune system and my brain more generally, my thinking and feelings change.  Seriously, that's freaky.