Narcolepsy Isn’t Just About Sleeping

 narcolepsy

At any given moment, I’m tired. It’s not the kind of tiredness that we all feel as a fact of being humans who have to wake up, get out of bed, and trudge to work on a subway full of rats and poop. We’re all tired, sure; we could all stand to enjoy the sweet embrace of our couch after a long grind.

No, I’m tired. I’m exhausted. You know that swirling, almost-drunk feeling at 3am, when you actually aren’t drunk but haven’t slept in a while, and your eyes are stinging and your thoughts are as sharp as a dust bunny? That’s what every single day is like for me. I have narcolepsy, and my brain exists in a permanent fog of sleepiness.

Whenever I’m awake, I feel as though I could fall asleep — even if I’ve just woken up or slept for 12 hours. I fall asleep if I’m sitting stationary any longer than 15 minutes; this includes the subway, movies, in cars, and most debilitatingly, when I’m working at my desk. As a writer, I’ve missed an inexcusable amount of deadlines, simply because I nodded off while typing, and woke up six hours later. I’d be struck by sleep attacks (an overpowering need to sleep), a sensation so irresistible that I could take to holding my eyelids open with my index fingers in effort to stay awake. It never worked.

The sleep attacks were particularly frequent when I worked in an office. I’d fall asleep while taking notes with a pen in hand, and awake a few minutes later to see that my writing had degraded into scribbly lines on my legal pad. In long meetings, I must have looked like I was high to my coworkers — I could feel my head drooping and my eyes fluttering at the conference table. What my coworkers couldn’t see was my fingernails digging into my thighs in effort to stay awake.

Narcolepsy is a chronic sleep disorder that causes a variety of sleep-wake symptoms. Scientists believe that it is caused by imbalance of hypocretin and orexin, brain chemicals that regulate sleep. It’s believed to be an autoimmune disorder. Most narcoleptics, like me, experience extreme daytime sleepiness (EDS), sleep attacks, and difficulty getting a proper night’s rest. Other symptoms include sleep paralysis, lucid nightmares, hallucinations that occur as you drift off or wake up, which are not fun. Some narcoleptics also experience cataplexy: involuntary muscle control loss, triggered by intense emotional stimuli. Have you ever seen videos of the fainting goats? It’s something like that.

I’m one of the lucky ones: I don’t have cataplexy. But the sleep attacks and EDS are no joke, and I experience sleep paralysis on a weekly basis. Sometimes I see men standing in my doorway while I’m fully conscious, but not quite awake. One those days, it’s tough to shake the anxiety when that’s how I’ve woken up that morning.

My symptoms began in my mid-twenties. It’s tricky to say for sure how I developed this condition, because no one else in my family has a history of narcolepsy. It’s not likely that I inherited from my parents. It’s more likely that it developed as a result of being in a bike accident and landing on my head.

Let’s back up. In 2009, I was riding my bike home from work, when I was cut off by a cab driver. I went over my bars and landed head-first the pavement. I distinctly remember seeing the pink grips on my handlebars and the ground rushing towards me. My next memory is being shaken awake by a passerby, and being hauled off into an ambulance while strapped into multiple braces. The doctors told me that I had whiplash and a concussion. Luckily I hadn’t broken any bones, but I did sprain some ribs and the bruising made me look like an old banana. I was out of work for two weeks.

As it turns out, concussions are far more insidious than we think they are. Ask any football player. My doctors couldn’t do much except monitor my brain to ensure it was swelling, but I just needed to ride out the symptoms until I healed. This meant headaches every single day for months, nausea, balance problems, and strange cognitive issues. I remember talking and being unable to understand the words coming out of my mouth. I perceived my own speech to be a nonsensical world salad, but to whoever I was talking to, I sounded completely normal.

Eventually, the concussion healed itself, but it may have left narcolepsy in its wake. My sleep issues arose shortly after the accident, so it would make sense to conclude that, well, one thing led to another. It’s impossible to determine for sure. Maybe I was always meant to develop narcolepsy.

For years after the car accident, I struggled with the sleep attacks, the fogginess, the tiredness that left me unable to function properly. Sleeping for 13+ hours a day wasn’t uncommon; my social life slowed to crawl as I flaked out on plans in order to go to bed at 8pm. My friends and family assumed I was depressed, and while I knew deep down that there was something seriously wrong, I sought no treatment and dutifully took my antidepressants. The sadness subsided, but the sleepiness didn’t.

It wasn’t until 2017 that I decided, to quote Samuel L. Jackson, enough is enough. I sought out a sleep doctor at Northwestern Memorial in Chicago, Illinois; a wonderful neurologist who listened to me from the get-go. He told me what I’d known all along: it’s not normal to sleep for 15 hours. It’s normal to take several naps per day. It’s not normal to let my life by ruled by my insatiable need to sleep. He arranged for me to take an exam called the Multiple Latency Sleep Exam. It’s a day-long hospital stay in which you’re strapped to various sensors and are instructed to sleep in specific patterns. When the results came back, it confirmed what I’d long suspected: I have narcolepsy. Finally, I could tell my friends that, when I cancelled plans at the last minute, it really was because I was tired.

These days, I take medication called Modafinil for my narcolepsy. It doesn’t treat the condition, of course, but it does a damn good job at treating the symptoms. I pop one of those babies when I wake up, and am wired for at least 12 hours. It’s in a class of pharmaceuticals called eugeroics; it acts on dopamine and histamines in the brain, which keep me up. Unlike traditional stimulants, it doesn’t trigger my anxiety and is not addictive. Modafinil has the added benefit of enhancing concentration and productivity. Those writing deadlines I kept missing? I’m now turning in work early. The difference it has made in my life is profound. For the first time in almost a decade, I feel like a normal part of the waking world. I’m saddened that I could have felt like this years ago, but am relieved that I’m getting relief now, rather than not at all.

Medication, of course, isn’t for everyone, But personally, I can feel a substantial improvement in my sleep patterns and work output. Nowadays, naps are a luxury, not a necessity. I didn’t fall asleep once while writing this essay! That, to me, would have been unimaginable just a year ago.

Obtaining treatment for my sleep disorder won’t solve all my problems. But I now have the energy to tackle the issues I’ve pushed to the side because I was too tired to deal. I’m incredibly lucky that narcolepsy is not as debilitating as other chronic health conditions, and that relatively safe treatments options are available. But if there’s anything I’ve learned through all this, it’s not if something doesn’t feel normal, that’s because it isn’t. That doesn’t just go for today’s politics, that goes for your health. These days, I cherish my 8 hours of sleep — after all, I still need to live.