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MONSTERS OF SLEEP: Christa Zielke on the challenges of living with narcolepsy

I’ve Never Fallen Asleep In My Soup
by Christa Zielke
I had always been tired
Now before you think, “Well everyone does! Ever hear of the 2pm slump?” 

I don’t mean that kind of tired. I mean the kind of tired where I would sit down on a bench outside of classes in college, ready to head into class on time, and I’d wake up an hour after class ended. The kind of tired that meant that I made a terrible passenger in a car – I’d always fall asleep ten minutes after the car started. The kind of tired that meant, no matter what time I’d go to bed, waking up was a painful experience – even with 8, 10, 12 hours of sleep. Sometimes, without an alarm, I’d sleep for 14 hours straight. My record was 16. Even once I was upright and in the shower, I’d fall asleep standing up. That kind of tired. 

I thought it was my sleep schedule, which I made as regular as possible. I thought it was my diet, so I cut processed sugars, red meats, starches, every culprit I could think of, out. I tried vitamin regimens. I exercised regularly (cycling, weightlifting, yoga, hockey, just to name a few). I was still tired. I always chalked it up to being someone who really, really needed a lot of sleep. And hated waking up.

Luckily, as I got older, I developed strategies to ensure that I could keep my job, keep morning appointments, and keep commitments to meet up with friends on a Saturday morning. It didn’t always work, but many times it helped. It involved multiple alarm clocks and a support system of trusted, close friends who would call me in the morning on days where I had a big morning meeting, checking in or taking turns calling at intervals to ensure that I was up and getting where I needed to be. Friends whom I’d made weekend morning plans with knew the passcode to my security system, and I would leave my door unlocked so they could come in and head to my bedroom in case I wasn’t awake. They’d help me up, walk me around sometimes. I had a boyfriend who would pull me out of bed each morning, lifting me up when needed to help me get up. I have some seriously understanding and kind friends, I know. 

By the time I was 29, other strange sleep issues arose. The first time I had a hypnogogic hallucination, I saw a man walking into the room. I was wide awake. I sat up, stared – the man was standing there, at the foot of the bed. I could see what he was wearing (white tank top, jeans) and the color of his hair (blonde, straggly). I did what anyone would do when they saw a stranger in their room – I screamed my head off and woke up my boyfriend, who of course screamed in response to my screaming. I thought he was screaming because he saw it too. But then, the figure just vaporized – disintegrated into nothing. I had no explanation. 

This continued off and on for years. I ran out of my room a few times a month, seeing something completely terrifying, thinking it was real. A burglar, a cat (I had no pets), spiders, rats, even remote control cars zooming around on the floor at one point. 

After a few years, I was quicker to realize that they were hallucinations, but they never stopped terrifying me. Once they vanished, or a few minutes after running out of the room, I’d figure out that they were not real. Eventually, this would turn into a 2-3 night a week thing. My love life became challenged… as in, “I’d love for you to spend the night, but…” 

Then, in my thirties, I started seeing a new doctor for unrelated issues. After missing every morning appointment with this doctor, he asked what had never seemed like an obvious question up until then:  “Why are you always having trouble waking up? You’re athletic, you eat healthy, you don’t drink alcohol, and you’re young. This doesn’t make sense. Maybe you have a sleep disorder.” 

I had never really considered this. But after his comment, I conceded that perhaps I was dealing with sleep apnea or some other common sleep ailment. So I agreed to go to a local sleep clinic and meet with a neurologist to discuss my symptoms.

When I talked to the neurologist about being tired so much, he immediately asked about hallucinations. 

“How’d you know?” I asked, and he just said, “I’m fairly certain you have narcolepsy.” 

I was blown away. “Not possible,” I said. The only thing I knew about narcolepsy was what I had seen in a movie in the 90’s where a character with the disorder was constantly collapsing and going into deep sleeps (I’d learn to really hate these representations of narcolepsy, as most people based their understanding of the disorder on these films).  

He laughed and said I should just do the two days of testing, including the MSLT (Multiple Sleep Latency test). These tests weren’t really that bad, although they glue about a million wires to your head, face and body. By the time I had shampooed all the weird glue out of my hair a few days later, the results were definitive. And so my treatment began. 

Being that there is no cure for narcolepsy, the best option is medication to reduce symptoms. The main drug that is prescribed is Xyrem – a terrible-tasting liquid that you mix with water and take twice nightly (I recommend adding a few drops of the new water-flavor enhancers). Xyrem is intended to help achieve the “deep sleep” that a narcoleptic cannot typically get on their own. 

The disorder itself is your brain’s inability to manage the sleep-wake cycle. Hence, you get very little “restorative” sleep when you go to bed at night, and you are prone to hallucinations either right before you sleep or right after you wake. 

Other related symptoms include sleep paralysis (the inability to move when you wake up), EDS (extreme daytime sleepiness – your body is trying desperately to “catch up”) and the co-diagnosis that many narcoleptics have, cataplexy (sudden loss of muscle tone in response to strong emotions). 

Xyrem helps with most of these for many narcoleptics, but not all. I’m one of the lucky ones, it works really well for me. During the daytime, I also take a mild dose of Ritalin (previously I took Nuvigil, but had difficulty with it) to keep me “awake” during the day. Granted, these medications don’t work well for everyone, and adjustments have to be made before you find the right levels/doses/combinations. But for me, this current medication combination has worked wonders. 

The difference has been amazing for me. People who work with me say I’m more awake, more cheerful, a “whole new person.” It wasn’t easy getting there, though. In the beginning, getting used to the medications, dealing with nausea (it went away eventually) and even getting used to being AWAKE – really, really awake (I often felt anxiety when I’d wake up so suddenly and fully) – was a huge adjustment. 

I’ve been fortunate to have great doctors who have helped me along the way. While my narcolepsy isn’t gone (I still fall asleep in cars, all the time), and the ongoing medication regimen is not always my favorite thing in the world, my life has improved greatly as a result of the treatment. I actually get up on my own, no alarm, at 6 or 7 a.m. most days (sometimes I take days off, just to take a break and “sleep in”, which also keeps the medication working well when I go back to it). 

Honestly, the most difficult thing has been dealing with others when they find out I have narcolepsy. Back to the “Hey, everyone gets tired!” comment. 

Yes, I’ve heard that one – a lot. Well-meaning friends have also asked me “Have you been tested for a thyroid thing? It might be that.” Or said, “I’ve never seen you fall asleep in our soup!! You can’t have narcolepsy!” 

While others want to share their thoughts on how I should use herbal remedies, teas, and other options (not that I’m opposed to alternative medicines), I’m fairly happy with the results I’m getting with my current medications. I know these people are just trying to relate to something that they don’t fully understand. That doesn’t make it any easier when I’m feeling like I have to defend my diagnosis or the means for treating it. 

As a result, I don’t really share my diagnosis with many people. But luckily, I have a few close friends and coworkers who are very understanding and supportive, and to this day will occasionally ask, “How’s the sleep thing going?” 

Much better, thanks. 

Christa Zielke resides in Cincinnati, Ohio. She was diagnosed with narcolepsy in 2012.

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