I had a hell of a time getting out of bed in the morning when I was a teenager. I missed the bus frequently and turned most mornings into frustrating affairs for my mother. I was tired, I assumed, because I also had a hard time getting to sleep at night. I chalked this all up to the type of insomnia that might plague any brilliant, brooding, introspective teenage genius. As I got older, I stopped worrying about the bus and started worrying about getting to work at a decent time. Insomnia had become an occasional visitor instead of a nightly companion, but I was becoming more and more aware of the disrupted nature of my sleep. I’d wake up five, seven, maybe eight times in a night. Usually, I’d just roll over and fall back asleep.
Mornings were bad, though. I might not remember hitting the snooze button a half-dozen times or maybe even turning off the alarm all together. Sometimes I felt like I didn’t come out of my fog and fully “wake up” until I was in the shower, eating breakfast, or in the car on the way to work. I’d often forget things: wallet, ear buds, breakfast. “Groggy” wasn’t a strong enough word.
Ok, so I’m not a Morning Person™, I figured. Lots of people say that — I guess this is what it means. Other than the occasional bout of sleep paralysis (an odd condition where you are simply unable to move for a short time after waking), I didn’t have anything unusual to complain about, I just wasn’t a great sleeper.
Occasionally I would make rigorous and dedicated attempts to reprogram my sleep schedule, to get up earlier, to be more productive, to become the Morning Person™ I’d always wanted to be.
Fifteen years later a good night’s rest was simply no longer top-of-mind. I knew I had a problem, but it’s not like it was making me sick all the time, and none of my attempts to fix it had ever paid off. Since I’d never been a great sleeper, I didn’t have anything to compare myself to. Then I got a FitBit and learned the truth about my nighttime routine. I wasn’t waking up four or five times, I was waking up 25-35 times every night.
A couple months and a few doctor visits later I found myself at Midway Sleep Center, covered in diodes and sensors, sitting on the foot of a bed in the creepiest room imaginable. It was an exam room all dressed up like a hotel room, but the disguise was paper thin, like a set on a low-budget sitcom. The fourth wall seemed out of place. There was no TV, the art on the wall hung at a jaunty angle, and I was told that I was not allowed to touch the light switch myself.
The first “study” occurred overnight and was primarily to test for respiratory issues like sleep apnea. The following day, I took a Multiple Sleep Onset Latency study comprised of a series of four 20-minute naps spread out over about eight hours. Then I went home exhausted, sticky all over from diode gel, and thoroughly confused by the lack of sleep, the blazing, 104° sun, and the whole David Lynchian experience. When my doctor called me a week later and he told me that the sleep study report mentioned signs of narcolepsy, I assured him he was wasting my time. “I don’t know much about narcolepsy,” I graciously allowed, “but I’m fairly sure I have the opposite.”
It took some doing on my doctor’s part, but after a lengthy consultation, I was convinced. Narcolepsy, I learned, is often less about falling asleep when you’re awake, and more about falling awake when you’re asleep. In fact, the hallmarks of narcolepsy are a tendency to reach REM stage within the first five minutes of sleep (most people take an hour or more), and an inability to stay asleep much longer than that.
What causes this nocturnal joyride? Your body has an system that governs sleep. Certain chemicals are released at appropriate times to instruct you to feel sleepy, to fall asleep, to wake up, even to prevent movement during the REM cycle. A narcoleptic’s sleep system is buggy. These chemical signals can occur at inappropriate times and to unusual degrees. Typically, this causes very disrupted sleep, which can cause both “excessive daytime sleepiness” as well as those “sleep attacks” for which narcolepsy is so well known. Other fun symptoms can include cataplexy (“a sudden and transient episode of loss of muscle tone, often triggered by emotions”) and sleep paralysis.
If you’re curious: I do have interrupted sleep, excessive daytime sleepiness, and sleep paralysis. I don’t have sleep attacks or cataplexy because, despite all of this, I am very lucky.
Ecstasy & speed
Because narcolepsy is caused by a genetic defect, there is no cure. Nothing can be done to fix the root cause or to teach your body to behave differently. The treatment is purely pharmaceutical. You take a drug at night to keep you asleep, you take a drug in the morning to make you feel wakeful, and you take them both for the rest of your life (or until sleep is no longer important to you).
Going to sleep
The recovering club kids among us may be familiar with GHB (brand name: Xyrem®). I was not, although I had heard it’s street name, “liquid ecstasy”, in passing. To be clear, it’s not ecstasy. It’s also not much fun. In fact, it’s pretty scary shit. It does keep me asleep, though. After all, it’s also a popular date rape drug. Here are some scary facts about GHB:
- It’s the only drug to be listed on two federal controlled substance schedules (“GHB” is on Schedule I alongside cocaine and heroin; “Xyrem” is on Schedule III, over where they keep the ketamine)
- It is an “orphan drug”, meaning it is approved for the treatment of exactly one condition
- Conversely, it’s the only treatment approved for this condition
- It has serious interactions with alcohol, so my decision making process around having a drink in the evening now includes considering whether I want to sleep that night
- To help the patient avoid dying, guidance is offered in the form of the “Xyrem Success Program”, which includes exhaustive forms and checklists, instructional DVDs, and a dedicated nurse who calls every two weeks to make sure you’re still alive
Nuvigil® (armodafinil) is a nootropic intended to help people with various sleep disorders power through their day. Perhaps you took it for cram sessions in college, or to adjust to a shift-work schedule, or when you were a goddam airforce fighter pilot. The stuff makes me feel pretty crummy, so I take it very rarely. When I do, I take half of a low dosage pill and reduce my caffeine intake.
For the most part, I feel great. Although I truly detest the idea of ingesting chemical on- and off-switches on a daily basis, I have truly enjoyed being someone who sleeps. I feel more like the person I’m supposed to be. I’m happier, healthier, more energetic, more focused. All this, even without Nuvigil, and while only taking Xyrem 3 or 4 nights a week thus far. I’m excited to keep catching up on rest and see how it impacts my life. Every part of my life has the potential to improve now that I’m able to be more present and more engaged. I’m not improved, I’m just more me.