Dawn Super frequently naps in her car. She was diagnosed with narcolepsy when she was 11 years old; the autoimmune disorder causes excessive daytime sleepiness, making it nearly impossible for Super to stay awake for more than six hours at a time. But after trying several medications to help combat the narcolepsy — and suffering all sorts of unpleasant side effects — Super realized that what works best for her is to get some sleep as soon as possible whenever she feels an “episode” coming on.
“One of my favorite phrases is take the nap before it takes you,” Super says. “You have to be diligent about it.” Here’s how she makes that work.
On building her life around sleep
Have you ever heard of the show Quantum Leap? It was about a doctor who created a time machine, and he would jump into other people’s bodies. Every time he opened his eyes, he had to figure out who he was, and where he was, and when he was, and what he was supposed to be doing. I often call narcolepsy the Quantum Leap disorder, because I wake up and sometimes I don’t know where I am or what I’m supposed to be doing.
Another thing that’s difficult is that narcoleptics get a lot of insomnia. And then if you end up with sleep deprivation from the insomnia, that can cause hallucinations. You see things, you hear things, you feel things, you smell things. The further you are into sleep deprivation, the more frequently it happens. So you have to do everything you can to get as much sleep as you can.
I’m getting maybe six, seven hours of sleep per day in total. I’ll get five or six hours at night and then naps during the day. I’ve tried to build my life around my narcolepsy, instead of trying to shove myself into society’s expectation of the way people should live their lives.
On how to nap in the car
I’m a consultant — I do empowerment coaching, I’m a freelance executive admin, and I do government paperwork for contractors. A couple days a week, I go on-site to a client, so I’ll take a nap before I leave. If I have to leave my house for ten hours, the only option I have is to nap while I’m out. As soon as I get the sensation of a sleep episode, I tell them I need to take an hour break and I go nap in my car.
I lock myself in, cover my eyes, and put ohm chanting on my headphones to help me relax and mask outside noise. One thing that happens with narcolepsy is we dance on the line of awake and asleep. So we’re in and out of REM, and we often have dreams that feel very real. The dreams about my car getting towed, the dreams about losing my car in the parking lot, the dreams about people knocking on my door and getting in my car — I have to ignore all of that. The ohm chanting reduces my cortisol levels and lets me be more aware of if I’m awake or dreaming.
I live in Los Angeles, so it’s very hot. I have scarves to cover the windows — I’ll open the doors on either side and cover the windows with the scarves, then shut the doors on them so that I can open my window if I need to without the scarves falling down. And then I have a sun shade for the front windshield. Thankfully, I have a Prius, which I also consider a medical device, because I can run the AC and not eat up all my gas.
Sometimes, I use a neck pillow to hold my neck in place, or I shove it behind the small of my back or put it between my head and the window. I almost always have a sweater with me, too. I have used my sweaters as pillows, blankets, and window blockers.
On how she sleeps when she’s home
I sleep without a pillow. I tried 800 different kinds of pillows, and my neck always hurt in the morning. One day, I just slept without it, and I felt so much better.
I usually use an old T-shirt to cover my eyes — I put one end over my face and then fold over the other end to make a little ball under the side of my head so it props up my neck a little bit. Especially if you’re having hallucinations, you automatically want to open your eyes. So having some sort of gentle pressure on top of your eyelids helps you relax that response. I don’t like a traditional sleep mask, because when I sit up, it stays on me and I can’t see anything. I use the shirt or a weighted mask that does not adhere to my head. I need whatever’s covering my eyes to fall off so I can see. I also can’t go full dark in my room because of the hallucinations, so I don’t use blackout curtains — if you wake up and can’t see, you’re scared to death. The faster you can see what’s actually happening, the quicker you can recover. So I cover my eyes instead of covering the room.
I have a Nectar mattress. It’s seven years old and it feels like I just got it yesterday. This sucker is still so comfortable. It stays cool when I overheat, so I’m not sweating. It’s king-size because I spend a lot of time there. Sometimes, if my body’s hurting, I’ll lay in my bed just because the mattress is so comforting.
I’m very particular about my blanket — it’s really soft and comforting and gives the right amount of coverage. Going back to the hallucinations, it’s easy to feel bugs or touches or things on you when you’re sleeping. So I always have to be fully covered. I might be able to stick my foot out if I’m too hot, but knowing that I’m covered with a blanket helps me process that it’s not real. I don’t like weighted blankets, because at a point in my dreams, it feels like someone’s on me instead of a blanket.
Another thing I use is a white-noise machine. It helps mask sounds like the dog scratching himself, or someone in the house using the bathroom, or any other kind of regular noises that might pull you out of the sleep that you really need to have. With this one, I can’t hear the pattern. I’m a parallel processor, a pattern seeker, so if I hear the loop, that will keep me up. There are 17 sounds on the machine, and the only one I can’t hear the pattern on is the white noise, so that’s the one I use.
When I get very sleepy, I get hot. If the room is warm, I’m not going to sleep as well. I like fans. They also add to the noise factor. It’s expensive to run the AC in California. Once it hits 80 or 90, I won’t have a choice, but until I have to, I prefer the fan just because of the expense.
On her secret-weapon THC oil for nighttime …
I have two movement disorders that are kind of common with narcolepsy. The first one is restless leg syndrome. As you’re falling asleep, your legs feel like they have spiders or bugs on them, and you just want to kick them off. And then once you’re asleep, they call it periodic limb movement disorder, where your body continues to move while you’re sleeping. So the brain’s like, Oh, the body’s moving. We should be awake. It affects the depth of the sleep that you get.
THC is an amazing anti-spasmodic. I take a full-spectrum THC oil that lasts longer than an edible or just smoking it. It’s more medicinal. You’re getting the whole plant — they’re not isolating anything. You can find videos of people with Parkinson’s putting a little bit of this full-spectrum oil under their tongue, and within three minutes they’re not shaking anymore and they can speak clearly.
Cataplexy is also something that comes with narcolepsy. It’s when your emotions trigger some or all of your body to go into sleep paralysis. You can roll your ankle, you can have slack jaw, you can fall all the way to the ground depending on what part of your body is paralyzed. They give people with narcolepsy antidepressants to help deal with cataplexy. I use a supplement called Shilajit Dry Drops. It’s a fulvic-acid supplement, and it acts like a natural antidepressant.
I also sometimes use CBN gummies. CBN is a form of cannabis that deepens sleep and eases pain. I take it right before bed because it’ll knock you out.
… and her mood-boosting gummies for daytime
When you have narcolepsy and you can’t wake yourself up and everyone is disappointed in you, it’s easy to feel bad about yourself. So when I take something uplifting, I get motivation, I get focus, I get mood improvement.
I have special gummies that I take during the day; you take ’em and you feel good. And if you feel good, you’re likely to do more physical things and be more active, and it’ll just help you sleep better at night.
Also, if you’re stressed out; if you’re scared; if you’re unhappy; if you’re miserable; if you’re depressed; if you’re fighting with your spouse, your kids, your co-workers, that’s all going to play out in your sleep. So the happier you can make yourself during the day, the better your dream life will be.
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