The Death of Sleep -- My Personal Experiences With Alcohol, Drugs, and the Sleep Disorders That Led To Them

"To sleep, perchance to dream -- ay, there’s the rub."
--Hamlet, Act III, Scene I

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If you're a member of my family, chances are very good that you have a sleep disorder. This post will be a brief history of my personal troubles with sleep and their rather nasty consequences. But first, a quick primer on sleep (or the things that prevent it).

Most people are familiar with several common sleep disorders: insomnia, sleep apnea, restless leg syndrome, somnambulism (sleepwalking), and somniloquy (sleeptalking), just to name a few.

However, these are the tip of the iceberg when it comes to the things that prevent us from getting our 40 winks. Among the lesser-known sleep disorders are:

• terminal insomnia
• fatal familial insomnia
• night terrors
• sleep paralysis
• R.E.M. behavior disorder

Of these, I'll be focusing on the last one, but I would like to take a brief moment to highlight the others.

Terminal insomnia is less threatening than it sounds -- rather than being a form of insomnia that is fatal, it simply refers to the sleeper waking prematurely (before completing a full sleep cycle) and being unable to fall back asleep, resulting in daytime fatigue. People who suffer from terminal insomnia rarely have difficulty falling asleep at night, resulting in many people suffering from terminal insomnia without realizing that it is an actual (and treatable) sleep disorder.

Fatal familial insomnia is actually more threatening than it sounds. It is a neurodegenerative prion disease (for reference, Mad Cow Disease is also a neurodegenerative prion disease) that results in extremely aggressive insomnia over the course of roughly a year, until the patient is no longer able to sleep for more than a few minutes at a time, and experiences no relief from the minor bouts of unonsciousness. It is always fatal and incurable, but extremely rare. I could do an entire post just about prion diseases in general and FFI specifically, but I suggest reading up on it if you're interested.

Night terrors are somewhat common in children, and involve the child screaming or crying in the middle of the night for no discernible reason. There is rarely any lucidity involved, and so the child tends to be inconsolable until the episode passes and they are able to fall back asleep, almost never with any memory of the event. The notable thing about night terrors, and how they differ from nightmares, is that they occur in non-R.E.M. sleep, but rather seem to occur during the transition from one sleep state to a deeper one.

Sleep paralysis is somewhat more common and well-documented than its counterpart RBD (next on the list). This is another subject that deserves its own post, so I'll keep it brief; in short, sleep paralysis is exactly what it sounds like: an inability to move for a (frequently) short amount of time while falling asleep or waking up. Sleep paralysis has been attributed to many things throughout the years, including demonic obsession (many ancient paintings depict a demon sitting on the sufferer's chest, preventing them from moving), alien abductions, and others. For those who have never experienced a sleep paralysis episode, it's easy to understand why it would flare the imagination.

However, I want to focus primarily on R.E.M. Behavior Disorder in this post, as it is something that I and my brothers suffer from. RBD can be thought of as the polar opposite of sleep paralysis -- while sleep paralysis occurs at the very beginning or the very end of sleep, RBD occurs spontaneously throughout the middle (though most frequently in the first hour or two of sleep). Also, while sleep paralysis is the inability to move when the body is supposed to, RBD is the ability to move when the body is not supposed to. However, before I get into the specifics of the disorder, and recount my own experiences with it, I want to clear up a common misconception.

What RBD Is Not

RBD is not simply sleepwalking. It is often the case that people who suffer from RBD also suffer from somnambulism, but the reverse is not true -- it is very unlikely that someone will develop RBD simply because they tend to sleepwalk from time to time. Both the causes and effects of somnambulism and RBD are completely different. RBD is a significantly different phenomenon.

Also, while on the subject of sleepwalking, I'll go ahead and dispel another myth: it is perfectly acceptable to wake a sleepwalker, and doing so is encouraged, as they could potentially pose a risk to themselves or others. The same is not true for RBD -- not because it would be dangerous to wake them up, but because the person is technically already awake. But with that, let's dive into RBD a little more.

What RBD Is

RBD is a neurdegenerative disorder (but not a prion disease like FFI or Mad Cow) that primarily affects adults over the age of 60. It affects less than 1% of the population, and so it is somewhat rare (and can be difficult to diagnose), leading to a lack of substantive research. As such, it is not entirely clear what causes the disorder -- however, it appears to have similar effects on the brain to diseases such as Parkinson's, and people who suffer from one are at significantly greater risk of developing the other. In my and my brothers' case, people who develop RBD early in life (we all developed it around puberty) have a 40% chance to develop Parkinson's or a similar neurodegenerative disorder later in life. For reference, Parkinson's Disease affects less than 0.5% of the U.S. population, so, of the three of us, odds are good that at least one of us will get it. We sort of hit the neurodegenerative lottery.

However, we still haven't hit the meat and potatoes of this post, which is what RBD actually does. It does have different effects on different people, so I'll focus on my own experiences, which, from what I've read, are among the most aggressive. Essentially, RBD is a combination of sleepwalking and a lucid nightmare. During an episode, the individual will be up and moving around, believing that the nightmare they are having is really happening. Episodes range from vivid hallucinations (the first episode I remember was giant spiders covering my bed) to intense delusions (believing that something dangerous or deadly is about to occur). I'll get into some of the more interesting (and frightening, and occasionally humorous) examples at the end of this post. But first, a brief history.

The Death of Sleep

I have never been what you might call a "model sleeper". I had vivid nightmares all throughout my childhood (the earliest one I remember happening when I was around 2 or 3 years old), and I've been known to sleepwalk and sleeptalk frequently (with often hilarious results, even going so far as to sing in my sleep once). I have also had the occasional bout of insomnia (and later, a much more nasty variant, but more on that in a moment), although my mother and brother take the lion's share of that particular problem. However, around the time I hit puberty, I started experiencing my first RBD episodes. As I mentioned, the spider incident was the first one I remember. I actually recall trying to climb onto my dresser from my bed to get away from them, and I'm fairly sure I scared the bejeesus out of my mom with how much I was yelling.

As I got older, my nightmares became less frequent as they were gradually replaced with RBD episodes. As terrifying as my nightmares were, I quickly learned that RBD was a much uglier beast -- while a nightmare would leave me feeling frightened or uncomfortable upon waking, the feeling quickly subsided as I realized it was simply a dream. RBD was a different monster entirely. I would be sound asleep, completely unconscious, and suddenly I would find myself sprinting from my room in a blind panic, absolutely, positively sure that I was about to die. The biggest problem with RBD, and why it is such a harrowing thing, is the blurring of the line between sleepfulness and wakefulness. You experience a strange kind of lucidity during an RBD episode -- you feel like you're awake, but you think like you're dreaming. So, while you're aware of your surroundings and are able to freely move around, and even, to some extent, make logical decisions (if I stay in my room I'm going to die, so I need to get out of my room), you can't rationalize what's happening to you as a separation of dream and reality. In an RBD episode, the dream becomes reality. A similar effect is often induced by hallucinogenic drugs, so if you've ever tripped particularly hard on LSD or shrooms, you might have some idea of what it's like -- especially if you've ever had a bad trip. And that's what an RBD episode is -- a short, but very, very bad trip.

I experienced RBD episodes with relative infrequency when they started, but after they had almost completely replaced my nightmares, they became more and more common. At one time in my life, I could expect to have a bad RBD episode once a month. A few years later, that was up to once a week. Not long after that, it was every other night. Where I am right now, without medication, I can expect to have several episodes every single night. They vary in their severity -- sometimes being extremely vivid and horrifying, while other times simply being dreamy and confusing. In addition to the intense RBD, I also suffer from a particular kind of insomnia. Most people know what it feels like to be just on the verge of sleep when you suddenly get the sensation of falling and jolt awake. When not taking medication, I can also expect this to happen several times a night before finally falling asleep, and then the RBD kicks in just to really take me to town.

So, before we talk about medication itself, I want to talk about the biggest mistake I ever made in my life: self-medicating with alcohol.

The Descent

I was well-versed with RBD by the time I was 23, although I still didn't know what the hell it was or what caused it. I didn't even know it had a name. All I knew was that it was a horrible thing that happened to me nearly every night. It was around that time that I started drinking more heavily. The drinking actually first started as a response to the severe depression I was experiencing at the time (no doubt fueled by my inability to sleep), but it quickly led me to a shocking and terrible revelation: if I drank enough, I could fall asleep without any problems, and I wouldn't experience any RBD episodes.

This started as a fairly infrequent thing. If I really needed to sleep, or I really needed to get to sleep at a certain time, I would get hammered. I was careful to drink extra water to mitigate any potential hangover the next day, but at the time, it seemed like alcohol was a miracle drug -- it alleviated my anxiety, reduced my blood pressure (I've had hypertension for years), pulled me out of my depression, cured my insomnia, and prevented my RBD. Of course, the problem was that it only did these things while I was drinking, so what started as an infrequent self-medication became a nightly ritual. I would come home from school or from work, get blitzed, play some video games, and pass out, only to do it all again the next night.

It was self-destructive. For all the good it was doing me, it was also doing me irreparable harm. As my tolerance increased, so did my drinking amounts. As my drinking increased, my hangovers took on more sinister forms -- rarely did I get headaches or nausea, but instead, fevers, dizziness, and bouts of extreme anxiety attacks. It was an intolerable situation, and so I set out to learn more about the disease that started it, and what I could do to cure it.

The Unhappy Middleground

I saw several doctors about RBD over the years. None of them had ever heard of it, unsurprisingly. We tried a few treatments until we landed on what seems to be the most effective treatment for RBD: clonazepam (trade name Klonopin).

Clonazepam is a benzodiazepine, in the same family of drugs as things like Valium and Xanax. It's used in the treatment of anxiety disorders and certain neurological disorders. Benzos, for those who are unaware, have a tendency to be habit-forming (to put it mildly). I was apprehensive about starting another addictive drug just to get off my current one, but it seemed that, between clonazepam and alcohol, clonazepam was the better choice. So, I gave it a shot.

It worked -- kind of. When I finally zeroed in on the right dosage after some trial-and-error, I found that it helped me feel drowsy before bed and was almost 100% effective at preventing my RBD episodes (I still had the occasional one, but they were far milder than any I had previously). In addition, I never had "cravings" for it, and it seemed like I wasn't at risk of developing an addiction. At least, not a psychological addiction.

But this is where things get muddy. While I could sleep with clonazepam, not taking it for a night or two caused severe rebound. My RBD episodes intensified dramatically and I started to suffer from benzo withdrawal, feeling feverish and extremely anxious (not unlike my alcohol withdrawal). Further, while I did sleep with clonazepam, the quality of that sleep was abysmal -- I would wake up several times throughout the night and feel groggy in the morning. The upshot was that, in the absence of torturing me with RBD, all that leftover creative energy manifested itself in extremely vivid dreams, some of which have even led to stories that I've written or are still working on.

However, it was clear that I had simply traded one master for another; I could be a slave to alcohol, or I could be a slave to clonazepam, or I could be a slave to RBD. Those were my choices.

At this particular moment, I still drink occasionally, and I'm still taking my clonazepam most nights (word to the wise: never mix alcohol with benzos), but I'm trying to gradually cut down on both until I'm off them. My RBD has started kicking back in as a result, but I'm starting to wonder if I have an alternative, or if I'll ever know what it's like to actually have a good night's sleep. I have friends who love sleeping, and I would be lying if I said I didn't envy them. But that's just the way it is, I guess.

The Episodes

Since you've stuck around this long, I thought I would reward you with some of my more interesting experiences with RBD. It's difficult to express in words exactly how some of these felt, but I'll do my best.

One particularly amusing episode (in retrospect) occurred several years ago, when I was living with my parents. I had been up for a very long time, and decided to take a nap. I thought it would be okay, since it was the middle of the day and I was exhausted, but it almost immediately triggered an RBD episode anyway. I had the sudden impression that the house was about to explode, so I bolted from my room, tore down the stairs and ran outside, hiding behind the car in the driveway. To any onlookers, it appeared that a grown man was crouching behind a car in his boxers. In broad daylight. After a few moments, I regained my senses and quickly walked back inside. My mother and my brother were in the living room as I walked in. They instantly knew what had happened.

I'll follow that one up with a couple more interesting ones. There are several recurring episodes that I've had where I'm either in bed or standing beside it, and I realize that I'm fading from existence. Not dying -- just disappearing, like Marty in Back to the Future. In fact, the scene where he holds up his hand and watches in horror as it starts to vanish is exactly what happened to me: I was staring at my hand as it slowly disappeared. I actually had the sensation that I could see through it. Unlike most episodes, this is rarely accompanied by a sense of intense fear -- it was more a sense of reluctant acceptance, as though I were thinking, "Well, I guess this is happening."

Another interesting but not entirely frightening episode started somewhat confusingly. Usually my episodes begin with me already aware of what's going on, but this time I simply found myself standing in the middle of my room with no idea of what I was doing. I turned around to get back in bed when I saw a red and black vortex swirling in the center of it. I realized that I must have gotten out of bed because I knew I was going to get pulled into it if I'd stayed. I turned around and started to leave my room, thinking that I didn't really want to be so close to that thing, but then realized I was probably dreaming. When I turned back around, it was gone. I got back in bed and went to sleep.

Now for the serious stuff. These are the kinds of episodes that I dread having every time I fall asleep. But I'll start with one that my brother had.

I was up rather late, doing this or that on my computer. My door was closed and locked, and I was minding my own business when I heard the floor in my brother's room suddenly thump. At first I didn't think twice, then I heard him quickly running from his room. "Yep, that's an RBD episode," I thought. Then he started pounding on my door. And I mean POUNDING. I had absolutely no idea what was going on, and I just sat there completely mortified for a few seconds. I got up when it stopped and opened the door to see him standing there. He explained that he thought the house was on fire, and my room was the only escape. I looked at my door. He had actually broken a hole in it with his knee. Thankfully, neither of us were hurt, at least not physically.

Another rather horrifying episode (and the only one in which I incurred an actual injury) happened in that same room. I woke up to the realization that there was a small pin attached to a balloon inside my ear (lol wut). The balloon was slowly inflating, pushing the pin closer and closer to my eardrum. I knew that if I didn't stop it, it would eventually puncture my brain and kill me, so I started frantically digging in my ear with my fingernail. By the time I came to, I had cut a sizable gash on the inside of my ear. It scabbed over and I couldn't hear anything out of that ear for weeks, although there thankfully was no permanent damage.

However, by far the most terrifying experience was when I was living at my old apartment. I'd had a few RBD episodes there, but nothing major. This one had me sleeping with the lights on for a few weeks. I remember bolting upright in bed and looking across the room at my closet. It was dark save for the streetlight that filtered through the blinds. I could just barely make out, in the low light, the silhouette of a person standing in my closet. Horrified, I jumped out of bed and ran straight for my door (which happened to be right next to the closet). As I threw the door open, I saw the figure step out of the closet and towards me. I ran into my bathroom and locked the door. My heart was pounding and I was actually winded. I stood there for a moment trying to collect myself. I told myself over and over that it was just an RBD episode, but I didn't really believe it. It had felt more real than any episode I'd ever had before. Even though I could rationalize the experience, I was still terrified, and decided that I couldn't just spend the night in my bathtub, so I steeled myself and readied my fists, just in case there was actually someone in there. I threw open the door and turned on the lights, but my apartment was empty. Of course.

Anyway, those are just some of my many experiences with RBD over the years. I wanted to share this post because it's not something that I see talked about very often, and I know a lot of people don't even know it's a thing, so I wanted to spread a little awareness (and take some time to share my personal experiences). Hopefully you found it informative and an interesting read. I've had many interesting experiences with sleep over the years (including lucid dreaming) and would like to do more posts like this in the future, but if you have an interesting account you'd like to share, please feel free to do so in the comments. I always find it fascinating to read about how different people sleep.