Episode 54: REM Sleep Behavior Disorder Part Deux

Yikes. This REM sleep behavior disorder thing has snuck up on me fast. Within the past two weeks, I've had two definite and one likely episode. I've already described two in my previous episode, but I'll recap them here and then tell you about the latest.

In the first, I woke in the middle of a dream in which I was fighting someone--perhaps a friend from childhood--and, though I'm hardly the violent type, I ended up kicking her as hard as I possibly could in the belly. Only it wasn't her belly; it was the end of the bed, and thank goodness none of our pups were sleeping there at the time, or they'd have been smashed or flung across the room.

The second is presumed, but no other logical explanation exists.

One day recently, I became aware of my finger hurting shortly after I woke up.

I saw two bruises on the back of my right ring finger between the knuckle and the tip. As I moved the finger around, the knuckle seemed to click back in place; it had been dislocated.

I had no memory of hurting the finger the day before, so it most likely happened while I was sleeping. Perhaps I'd flung it behind me and hit one of the spindles of the headboard. Who knows--I may have even wakened at the time, but I can't say. My arms and legs have been jerking all over the place while sleeping for a long time.

This is actually yet another sleep disorder that is found, again, with neurodegenerative disease as well as narcolepsy: period limb movement disorder. Really? Apparently so. I remember falling asleep in Germany in the room where Sabine, my best friend who was dying, slept next door. Every night I'd wake up after my arm struck the wall, horrified that I might have wakened my sick, sleeping friend. This sort of thing continues happening--I catch myself now and then.

As WebMD says regarding the condition, "These movements are very different from the normal spasms, called hypnic myoclonia, that we often experience initially while trying to fall asleep."

Scary, too, is that period limb movement disorder (and perhaps these other problems?) may be caused by antidepressants. I began taking Effexor shortly after it hit the market in 1996, and I've taken it ever since. Though I haven't been severely or clinically depressed at any time other than that episode in '96--brought on, I'm convinced, by my very bad reaction to Depo-Provera--the Effexor has been a life-saver, ironically, in controlling my anxiety. I'm on a low dose, but no one ever tested the drug over two decades. It doesn't seem entirely unlikely to me that the drug might have brought on this degenerative process.

Now we come to last night.  Again, I woke in the middle of a dream--but just a moment too late, as I'd just punched Honey several times!



Right away I realized what had happened; I gasped and apologized. He just sort of grunted and kept sleeping; I wasn't sure he'd even felt it. I hit pretty hard, but he was covered in two layers of comforters--I tend to sleep on top of the covers, and he stays cocooned underneath. Probably a good idea especially now--much safer that way!

The fight in that dream is murkier for me; I just know I was fighting someone, and I'm pretty darned sure it wasn't Honey, and my poor innocent sleeping darling was pummeled because of it! Fortunately, WAS his chest and not his face that my fists connected with.

Today I asked him if he remembered my punching him, and he said he did. Perhaps, like my friend whose husband also has the disorder due to Parkinson's disease, he should line up some pillows between us in bed from now on.

This is scary stuff! Not only because I might hurt a loved one--man or beast--or myself. But because the condition is frequently a harbinger of brain degeneration.

According to WebMD, "The exact cause of REM sleep behavior disorder (RBD) is unknown, although the disorder may occur in association with various degenerative neurological conditions such as Parkinson's disease, multisystem atrophy, diffuse Lewy body dementia, and Shy-Drager syndrome."

Another cause is drug or alcohol withdrawal, but I'm not dealing with either of those.

Almost more disturbing to me is the violence of the dreams. I have always been quite good at remembering my dreams, and never have they contained much, if any, violence (other than a period decades ago in which I was the victim of violence--not the perpetrator). I can't help but wonder whether this condition also increases the level of violent content in dreams. As a peace nut, that scares me a lot.

In fact, "RBD is characterized by the acting out of dreams that are vivid, intense, and violent." There it is. Violence. Not how my brain, even my sleeping brain, usually works! "Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing."

There's that arm flailing thing. And I lifted my body off the bed when I kicked that first time--it was a truly violent, all-body kick.

Very disturbing!

However, that violence is not indicative of a violent personality, as I already felt confident was true. "People with RBD are not more aggressive or violent than others when awake. RBD is a medical problem," says Sleep Education, a Web site from the American Academy of Sleep Medicine. "It is not a psychiatric disorder."

In fact, the Cleveland Clinic describes the dreams in this disorder as "distinctly altered"--one presumes meaning altered from "normal" dreams the person may have--"that are vivid, intense, action-packed, and violent."

Happy happy, joy joy, in the famous words of Ren and Stimpy.

WebMD states that "RBD often precedes the development of . . . neurodegenerative diseases by several years."

Well, la di da.  I already have my diagnosis of neurodegenerative disease from the one doctor I see that I implicitly trust:  the eminent neurologist Dr. A, as described in other episodes.

So, all I can surmise from this sudden burst of REM sleep behavior incidents is that the degenerative process is speeding up.

I know I've been sleepier than ever before.  I'm having a harder and harder time doing much of anything, though I forced myself to bake sugar cookies for Valentine's Day today, and I spent the last couple of days working on a toddler dress with some of the fun fabrics I'd bought while making purses. Making toddler dresses for future sale on Etsy is how I channel my never-had-a-baby-girl blues.

The cookies aren't frosted and the toddler dress isn't done yet, however.

Still have to buy confectioner's sugar to make decorative
frosting for MOST of the cookies (we were out), but I did
manage to finish a few tiny linzer cookies. Yum.

Sleep so frequently intervenes.  And though the hypersomnolence is a royal pain in the ass, having stolen my professional and much of my social life, sleep over the past couple of years has been mostly pleasant. Other than the night terrors and hypnogogic hallicinations described in my previous episode that happened decades ago, I've rarely had nightmares.

But now I'm having nightmares--violent nightmares--and they are bleeding into "real" life.

I don't want to hurt my doggies or my Honey--or myself, for that matter.

And I don't want to degenerate this quickly.

I like my brain.

I really do.

I'm going to miss it if it goes.  I'm going to miss me.

In the meantime, pleasant dreams!

Episode 53: Wake Me Up When It's Over, OR When Dreams Become Too Real

Sleep is a fascinating part of human life. I've always thought so, but I never dreamed (ha) it would become such a huge part of my life--as in, regularly sleeping 12, 15, 17, 24, even 30+ hours at a time, nearly every day. Once in a blue moon I'll have the opposite: an awake period of 24-30 hours, and then I'll go back to the hypersomnolent pattern.

That problem is accompanied by a couple of other sleep abnormalities. I have a reversed circadian rhythm--Circadian Rhythm Disorder--in that my most wakeful time is between midnight and 6 a.m. I sleep most of the rest of the time. Thus, I could easily be diagnosed with Excessive Daytime Sleepiness (EDS), an actual medical diagnosis, though that hasn't officially happened in my case. At times, I have insomnia at night as well.

A typical day

About a year ago I was, however, diagnosed with Idiopathic Hypersomnia after a Multiple Sleep Latency Test (MSLT) proved I fall asleep extremely fast after being awakened and forced to stay awake for 20 minutes or so, then allowed to lie down again. This is after a full night's sleep, mind you. Falling asleep in anything under 10 minutes is diagnostic, and my average was 4 minutes.  I also quickly went into REM sleep on a couple of the times I was "allowed" to fall asleep.

These test results could also indicate narcolepsy, but I don't have "sleep attacks" in which I suddenly fall asleep in the middle of a conversation, and as far as I know I don't have cataplexy, which most narcoleptics do. In cataplexy, a narcoleptic loses all muscle control upon strong emotion, including humor. I do think I may have had an episode or two, but not regularly enough to really register. I do tend to collapse when really laughing.

Today I managed to get out of the house for three hours to run some errands. That should have been a relatively easy task, especially since about half that time was spent having a late lunch with my son, but when I got home I was utterly exhausted and clipped on my CPAP and went to sleep.

My CPAP is for the sleep apnea I was also diagnosed with a year or so ago.  This "Continuous Positive Airway Pressure" machine includes a mask that goes over my nose with a long tube connecting to a machine that constantly sends air into my nostrils, thereby ensuring air will pass through any obstruction in my airway (such as its collapsing, which happens in obese people as well as those with poor muscle tone, when lying down).

Sleep apnea can also be caused by a "central" (brain) problem, in that the brain's mechanism for making one breathe during sleep is broken. I suspect I have both types.

Yet, sports fans, those are not my only sleep problems.  Oh, no.  The plot gets much, much thicker.

The latest parasomnia--a word meaning abnormal sleep behavior--I've been blessed with, apparently, is REM Sleep Behavior Disorder.  So, what's that?

REM sleep, as nearly everyone knows, is a phase of sleep in which a person's eyeballs rapidly move back and forth ("Rapid Eye Movement sleep"). It's associated with dreaming, but dreaming can happen in other sleep states as well.

The body--specifically the brain--does an amazing thing when someone is in the REM state: it paralyzes the sleeper. That's why you can run and jump and hit and kick and fall and do all kinds of physical things while dreaming with barely an indication of this physicality in the sleeping body.

In REM sleep behavior disorder, the brain fails to keep the body paralyzed. I learned about this from the wife of a friend with Parkinson's Disease. She's been kicked and punched by her husband while he's in the throes of a dream.

"He'll be on the basketball court," she says of her husband, who was a star player in school, "and he'll get in a fight and start flailing out and hitting."  She now sleeps with a row of pillows between them, as these movements can be strenuous and dangerous to both of them.

Well, guess what happened to me the other night, sports fans?

I was dreaming about getting into an argument with a friend, and very uncharacteristically I became so angry I kicked at her as hard as I could. I woke up just then, as both my legs were forcibly kicking, so hard that it felt as if my butt had come off the mattress. I'm just grateful my three dogs weren't asleep at the foot of the bed, as they often are. The kick was so hard I'm sure I would've hurt them.

Today I found my right ring finger hurting, and when I looked I saw two bruises on the back of the finger between the knuckle and the tip. I was mystified; I didn't recall any incident that could have caused this. I moved the finger a bit, and the bones clicked; apparently, they'd been out of joint, and now I'd clicked them back in.

The only explanation I can come up with is that I flung my arm out in sleep, and the finger connected with one of the spindles in our headboard.

This is more than a little disturbing, as REM sleep behavior disorder can be a sign (and is often the first sign) of degenerative brain disease.

Oh, yeah. I have degenerative brain disease. The eminent, amazing, wonderful Dr. A. diagnosed me with that very thing, didn't he?

It's just upsetting that I now have yet another sign that my brain is losing its mojo.

And the one thing I've always felt good about has been my brain. I'm a smart gal--or I was. I come from a smart family, and I have smart siblings. My father got his degree in chemistry, worked as a physicist, and then worked as an electronics engineer in aeronautics. He has two patents. One of his designs--a radar altimeter in the early 1960's--flew in every commercial aircraft flying, if I remember what he told me correctly. And Mom was no slouch in the intelligence department, either. Her love of words came through all the time--she had a quick wit and could always catch a pun; she loved writing silly but sweet and clever poems for people's birthdays or retirements, and in my sons' photo albums.

And, as I've bragged before on The Mary Dell Show, in third grade on standardized Iowa tests used in many states, I scored in the 99th percentile in abstract reasoning. That's certified geek/nerd level! There is no 100th percentile. It means I scored better than 99 percent of the others taking the test throughout the U.S.

So, the last thing I want to have happen to me is to lose my marbles, though it's happening, apparently.

Sleep disturbances, actually, have plagued me my whole life.

As a little girl, I rocked myself to sleep. This is actually known as Rhythmic Movement Disorder. I'd get on my hands and knees and rock until falling asleep. After about age 3 or 4, I stopped rocking on my hands and knees, and simply rolled my body back and forth, either singing or listening to music, until I fell asleep. I didn't grow out of the habit until I left home at the age of 19 to get married. Having to stop it was difficult. My husband caught me more than once doing this when I didn't think he was around. For some reason, it was immensely comforting.

Although many tiny children do these things to get to sleep, only 5 percent of kids age 5 or older do, according to the Cleveland Clinic's page on the disorder. And I did it until 19 years old! And even a few times after that. Sheesh!

Another childhood sign of sleep problems is bedwetting, and I could have won the prize for most prolific bedwetter ever. Rare was the night when I didn't pee my bed, and this persisted until about the age of 10. The last time it happened was on a family vacation--I was 12 then and horrified to wake up on the camper's mattress with that familiar warm, wet feeling underneath me.

But probably the most dramatic of my sleep problems to date began when my mother died of cancer in 1989.

The night after she died, I had trouble falling asleep, naturally. After crying myself to sleep, my eyes suddenly opened, and I saw my mother walking toward me from the shadows of the alcove between my bathroom door and closet.  She came close to me and touched her hand to the side of the mattress.  "Don't worry about me," she said.  "I'm fine."

If my mother could come back and tell me something, this is what she would say. She always worried about everyone else. So maybe this was truly a visit from the beyond, or it was merely my body's reaction to severe stress. I like to think the former, but most likely it's the latter.

The very next night, I was in a dead sleep when I felt my body suddenly being propelled to a sitting position, and an overwhelming terror came over me. Eyes wide open, I scrambled out of bed and ran down the hall from my room to the living room. I stopped when the room appeared to be filled with shapes--they looked like gauzy torsos--that at first scared me but then made me feel reassured. I remember thinking they were spirits, and somehow they were there to comfort me, strange as they were.

I sometimes think those gauzy torsos may have harked back to the first time I lost my mother. I can't remember that time, but Mom told me about it several times. She obviously felt very guilty about it, but it wasn't her fault. I was eighteen months old--the height of separation anxiety--when I contracted a virus and became dehydrated due to diarrhea and vomiting.So sick and dehydrated, in fact, that I was placed in hospital nursery, quarantined from my family.

Mom said the door had a small window, and she would look in and wave and smile, and I would be hysterical. I climbed out of the bed several times until a net was put over my crib.  By the time I was released after three days, I wouldn't even go to my mother.  Instead, I went straight to her best friend, Mrs. Schutt.  I kept up this snub for several hours.

'Way back in 1969, John Bowlby described a child's sequential reactions to separation from the primary attachment figure. First is protest. That was me, screaming and escaping my crib. Second is despair. A child of eighteen months cannot understand that a separation is temporary, and probably seeing my mother through the window only intensified my feelings of having been tossed away. My mother's smiling and waving at me must have felt as if she were making fun of me in my misery. The last stage is detachment. When a child detaches from the parent, even for a short time, it's evidence of a fundamental break.



I can't help but wonder whether those gauzy torsos in the living room weren't memories of the nurses who had tended me. Losing my mother to cancer when I was 29 had triggered those feelings of losing her so many years before. Back in that nursery, with the net over my head, perhaps I couldn't see the nurses' heads. And perhaps they terrified me--who knows what might have happened back in those days if a nursery weren't monitored properly--but then they also proved to be caregivers, which is why my terror in the living room passed and I recognized the "spirits" as benevolent. It was the psychological break from my mother that had brought back those buried memories.

These types of events are a parasomnia known as Night Terrors. They are more frequent in children, but they do happen to adults as well.

Meanwhile, after those first two nights after Mom died, the border between sleep and wakefulness was shattered. For the next year or more, I regularly woke up in terror. And now it was not my mom or benevolent spirits visiting--these were men barging into my bedroom who were intent on raping and/or killing me.

And the weirdest thing was that I was seeing those men with my eyes wide open and with the same perception one has when wide awake. In other words, these were true hallucinations, not just "realistic" or even "lucid"* dreams. There simply was no difference between my perception in wakefulness and my perception when these men barged in. Talk about terrifying. After a few moments, I would realize I was in bed and my eyes were open and I'd woken up in the middle of a dream only to have it enacted in what seemed like true life. And each night it happened, it was just as terrifying until the realization came over me that, yes, it was another of those dreams.

This disturbance, no doubt, was due to my feeling of vulnerability--and my truly vulnerable brain's reaction thereto. My dad had died three years before, and now my mom was gone. I no longer felt safe. All that fear I'd felt as a tiny child came rushing back. I was as vulnerable as I'd been then, relying on nurses to care for me instead of my mother, who had inexplicably abandoned me. I was alone. And I was afraid.

And, sports fans, there's a name for this parasomnia:  it's called Hypnagogic Hallucinations. They are true hallucinations that hit people just as they're falling into REM sleep, and they have been happening since the written word began recording them. Hallucinations that occur when one is waking up are called Hypnopompic Hallucinations, and so far I've been spared them. Thank goodness for small favors.

The myth of the female Succubus and male Incubus is related to this very sleep disorder. These demons were said by medieval lore to pounce on a sleeper with the intent of doing them harm, usually sexually and by suffocation. For more on this connection, see "Incubus Attack" by John Cline, PhD, in Psychology Today.

The Nightmare [with Incubus] by Henry Fuseli, 1781

Myths aside, the actual cause, sleep scientists surmise, is that the sleeper stops breathing, and the body's sense of suffocation brings about the terror--and the mind concocts this evil that continues even after a person has "woken up." It all happens so fast.

I do stop breathing regularly while sleeping. That's what sleep apnea is, and why I now use a CPAP. I can remember waking from a bad dream when I was 16 or so. I'd just learned to drive, and in the dream my car got stuck on train tracks. The train hit and pushed the steering wheel into my chest, and I couldn't breathe. I woke up gasping for air.

Fortunately, the hideous hallucinations after my mom died stopped within a year or two, but I continued to have very disturbing dreams for a couple of years after that--almost hallucinogenic, but not quite. I'd wake up certain that the world knew a terrible secret about me, and everyone I knew was outside my window, shaming me. Oh, the agony. The shame of it.

Hmmmmm.  Outside the window.  Just as my mom was outside that little window in the nursery door, making me believe I'd done something very, very bad.

In the dreams after Mom died, the secret would be clear to me, but when I woke up I could never remember what the secret was. It was driving me slightly crazy that I couldn't remember such a vital secret about myself.  Finally, one night I put a tape recorder next to my pillow, determined to say what that secret was immediately upon waking up.

The next morning I played back the recording. In a zombie-like, hypnotized-sounding voice, I'd said, very slowly, "I know the truth now. There - is - no - hope."

The strange sound of my voice, and what I said, so freaked me out that I immediately erased the tape. Hearing it one time was enough. It gave me the creeps.

That was the horrible secret: "There is no hope."

Well, that's a cheerful note to ponder.

But I'm a  person who has always had hope--except perhaps during those three days quarantined in the nursery, and I still do. I hope this new sign of my degenerating brain doesn't mean I'm about to slip into senility. I hope my brain degeneration isn't speeding up, and these one or two episodes will won't be repeated for a long, long time.

Like I said, sleep is a fascinating thing. Had I to do things over, I would definitely be a neuroscientist. I have more in common with Amy Farrah Fowler (the Big Bang Theory character) than I care to admit! But it's a bit too late for going into that field, I'm afraid. I can record my experiences, though, and perhaps somehow contribute to the science that way.

I hope I have a long time when I have the wits to be able to record these strange happenings. And I hope I don't hurt myself, my Honey, or my dogs if I begin acting out my dreams instead of remaining paralyzed during them, as one with a "normal" brain would do.

I hope. I still hope. My secret was wrong. There is always hope.

Hope, after all, is the thing with feathers.

From Poetseers.org

And sleep, after all, is a magical mystery tour.

"Roll up!" and come along with me as I share my experiences in that mysterious place between sleep and wakefulness.

Tell me this album cover doesn't look like
a wild dream!

__________________________________

*Lucid dreaming is realizing you're in a dream while you're dreaming. I have also had this a few times. Most notable was when I was flying in a canyon and realized it was a dream. I was able to direct my body in acrobatics. I even sent myself straight down to the canyon floor and pulled up before hitting. It was fun. I was flying. I was dreaming, and I knew it, but that didn't make it any less fun.

Episode 47: Hypersomnolence, OR Sleeping Too Damned Much, OR I Want My Life Back

I've mentioned hypersomnolence on the show many times, but what exactly does it mean?  How does hypersomnolence affect one's day-to-day life?

A typical day.

Of course, "hyper" means too much of something, and "somnolence" means sleepiness. And I have been dealing with this strange and debilitating condition for the past six-plus years. The official diagnosis is idiopathic hypersomnolence; "idiopathic" simply is medspeak for "We don't know why the hell it's happening." More frequently than not, it seems, idiopathies end up being caused by brain pathologies, and recent studies on this condition point toward the same.

Another term used is primary hypersomnolence; this means the problem is due to its own cute self and not something else going on in the body.

Another typical day.

Hypersomnolence can also occur due to other health conditions, such as cancer, in which case it's known as secondary hypersomnolence. Whatever is happening to me is slow-moving, and most cancers aren't, so I'm not overly concerned about that. As any faithful viewers know, I suspect I may have myotonic dystrophy and am waiting for my DNA results as we speak. This is a genetic neuromuscular condition, and one of its hallmarks is--you guessed it, sports fans, hypersomnolence. But whether or not I have myotonic dystrophy, there's no doubt (and I have scientific evidence, as described below) that I have, indeed, been blessed with hypersomnolence.  Lucky me.

And, yes, yet another typical day.

I've always tended toward sleepiness, particularly having trouble waking and getting out of bed in the mornings and, in recent years, the afternoons and even some evenings. Yet I managed to get going all through school and most of my work years, kicking and screaming all the way. I used to sleep in until 1 or 2 on the weekends and would feel a little guilty for it--but that was nothing compared to what I've experienced since 2006 or 7.

Episode 19: Wonderful (Not) Wegener's Granulomatosis

My health journey continues to lead me to places I've never dreamed or heard of.  I mentioned earlier that my ENT thought I might have Wegener's or a similar condition.  I saw a rheumatologist at Johns Hopkins on July 18, and she has initially diagnosed me with this oh-so-wonderful disease.  She then sent me for a CT scan of my chest--lots of pulmonary and airway issues, which are common with Wegener's--and a slew of blood tests.

Now, we may yet find out it's not Wegener's; perhaps it's cryoglobulinemia, which has many of the same effects.  Since I also have hepatitis C, the cryo is a good possibility--it is common with folks who've had hep C for many years, as have I. Wegs and cryo both affect the blood vessels, which then affect vital organs, such as the lungs and kidneys. When I say "affect," I mean more or less destroy.  It's true--my nose has necrosis (dead tissue) in it from the inflammatory damage. So far I have not tested positive for ANCA antibodies, which would have just about confirmed the Wegener's.  But that doesn't mean I don't have it, as a small percentage of "Weggies" tests negative and/or may develop the antibodies later.

From MoonDragon's Health & Wellness
http://www.moondragon.org/health/disorders/wegenersgranulomatosis.html

             

Episode 8: Effexor, Mugwort, and Dream Pillows

N.B. Feel free to skip portions surrounded by [brackets], as these represent tangents and, at times, diatribes.

In Episode 6, I discussed my recent identification of a heretofore "noxious" weed (in my estimation) in my yard. The tenacious thing pops up in all my garden beds and, as much of my lawn is uninitentionally turned over to weeds (because I don't have the energy to work it the way I want to), this monster grows to as high as 4 feet in the "prairie field" behind my house. I have precious little sunlight in my yard, which sits on the northeast-facing slope of an Appalachian mountain. The sun sets early on my house, like 4 p.m. So I know my sunny zones, one of which is a stretch along the northern woods where certain patches enjoy daylong sunlight that flows over the house's roof, past its shadow, and into that narrow strip before my yard ends at the wooded (and wonderfully natural) lot next doors.  Other spots, other than a 20 x 20 patch just in front of the house and before 100-foot spruces block it. This is completely extraneous information, but I do try to describe my setting now and then, since most of The Mary Dell Show, in homage to its precursor (see the Pilot Episode for the history of the show) will be devoted to herbs, plants, mushrooms, and such.  At least I hope so.  Medical problems are cropping up--pun intended--at an alarming rate.  These topics occur to my rambling brain during ramblings in my small, mostly wooded 1/2 acre lot, and sometimes the surrounding woods owned by my neighbors, who don't mind.

Mugwort, photo from Horizon Herbs