Image: Alice Popkorn/Flickr

What It's Like to Be Clinically Nocturnal

Ritalin in the morning, Ambien at night.

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Jul 16 2015, 1:30pm

Image: Alice Popkorn/Flickr

Julia Plant is 22, turning 23 at the end of this month. She lives in Denver, where she works in television development. She doesn't sleep well. She has never slept well.

"I don't sleep well" is a common complaint, but Julia really doesn't sleep well. Growing up, she could never fall asleep at night. She missed a lot of school because she was too tired to get out of bed, and she often got sick because a lack of sleep weakened her immune system. Her father would go to Sam's Club and buy cases of Red Bull to help her in the mornings. "I would fall asleep in class all the time," she said. "It was awful."

Her parents thought it was normal. What kid goes to bed on time? But gradually they realized something was wrong. When Julia was in 7th grade—around age 12, she estimates—her parents finally took her to a doctor and got her a prescription for Ambien.

A few years later, in high school, Julia got a full diagnosis: Delayed Sleep Phase Syndrome, which the DSM-5 defines as a subset of Circadian Rhythm Sleep-Wake Disorder and Wikipedia defines as "a dysregulation of a person's circadian rhythm (biological clock), compared to the general population and relative to societal norms."

"I always wonder, god, what would it feel like to get a good night of sleep?"

Basically, the sun makes Julia tired. If the 9 to 5 workday didn't force everyone to keep the same hours, Julia would go to bed just before dawn and sleep until noon. In other words, she is clinically nocturnal.

The new doctor gave her Ritalin to complement the Ambien.

Unfortunately, there is no better solution than a cocktail of uppers and downers yet, but Julia is determined not to let her sleeping disorder hold her back. We talked to her about what it's like to live with her condition and be at odds with everyone else's schedule.

MOTHERBOARD: What time do you usually go to bed and what time do you wake up?
Julia Plant: With the use of medication, I go to bed around midnight and wake up around 8. But I do not ever sleep through an entire night, ever. I wake up 100 times.

I have a sleep study coming up because [a doctor] was telling me I should not be waking up that much during the night, so they're going to monitor me during the night and see why I keep waking up.

It used to be I would have problems falling asleep. Without medicine I'll be up until 3:30, then I'll want to sleep until 10:30, 11, or 12. But I would be able to sleep pretty well at least—it would be restful. But now it's different. Maybe I'm starting to become immune to Ambien, since I've been on it since I was like 12.

If you were to just fall asleep and wake up naturally, what would your ideal schedule be?
I would say 4 AM to noon would be my ideal sleep schedule.

In college I worked at Applebee's and I was a bartender. That schedule was great. I was totally down to be at work until 1 AM, not fall asleep until 3:30, but be able to sleep in the next day. I think a lot of people with sleeping disorders just work those kinds of jobs.

Why not just embrace it and say, "okay, this is my schedule, I'll stay up all night"?
I did when my job could accommodate that. But I want to be in the field or directing a TV show someday.

In college it was nice. I could schedule my classes later. But for high school it was awful. I'd have to be up at 7 AM. High school was definitely the worst hours for me.

If I had to do a job and be up from 6 AM, there would be no way I would ever do that job. 9 AM is the earliest I could go into work. If I had an option to work different hours, I totally would. I just don't want my sleeping disorder to affect my goals and my career.

The exact diagnosis is "Delayed Sleep Phase Syndrome." What does that mean and how common is it?
One percent of people have it. That's what I've been told, at least.

A lot of people have it in their teens and will grow out of it in their twenties, so there is a chance that my body will just right itself.

You know that pill melatonin that people take? It's over the counter to help you sleep. Your brain naturally secretes that drug when the sun starts going down. So say like 6 o'clock, 7 o'clock, it starts to get darker outside—your brain sees that and says "okay, secrete a little bit of that sleepy drug." A little bit more, a little bit more. Okay it's pitch black out now, tons of that melatonin coming out of your brain.

My brain does it opposite. When it gets dark out, it does not start to release that. Instead it would be like, oh the Sun's coming up or it's bright out. Right in the morning is when my brain would be releasing that chemical.

What was it like before you got a diagnosis?
My parents just thought I was full of shit. I was always sneaking out of bed, running around.

It was impossible. My mom was like, "we thought that you were just the worst child ever until we found out you just have this disorder."

I would get sick a lot too because I just wouldn't sleep, and then I would just do all the same daily activities that all the other kids do, so I just had a lower immune system. In 7th grade I missed like 32 days of school, or 40 days, something just nuts.

It was partially because when I would wake up I'd be so tired, I'd be like, "I can't go to school." My mom thought I was faking being sick. And then I would have basketball practice and tennis practice and lacrosse practice and I was really busy, so I just wouldn't sleep and I would get sick.

Finally I said, "this isn't a joke, you guys. I'm not sleeping." And they said, "okay, let's go to a doctor."

Julia Plant. Photo courtesy Julia Plant

How long did it take to figure out what was wrong with you?
It's really hard for doctors to give sleeping pills to kids. They think it's really bad. They made me jump through all sorts of hoops before they gave me medicine. I had to go to a sleep therapist. I had to envision that I was in a purple bubble. "What color is your aura, Julia?

Okay, envision yourself in a purple bubble. Do you see the bubble? Okay, imagine yourself being tired..." And I was literally in this room trying not to be rude and laugh in this woman's face.

I had to go through months of stupid stuff like that, and like, no screens, no TV, no late night eating. There's all sorts of things they make you try before they give you medicine. I think after like six months... We finally found a doctor who was like, "yeah, if you're not sleeping and your school and your mental health is deteriorating because of it—yeah Ambien is not good for kids but neither is not sleeping, so here you go." And it was just like night and day difference. And then the Ritalin also really, really helped when they added that.

Did your quality of life improve after you got the Ritalin and the Ambien?
Absolutely. People have crazy Ambien stories—I don't have really bad ones. I think I sleepwalked once. I woke up sorting through my clothes in my closet one time, like picking out outfits when I was in high school, and it's super disorienting to wake up like that.

Is there any talk about other treatments, like I don't know, electric shock therapy to permanently fix it?
No. I mean, doctors have told me, "well you could just work at night." Like, "go be a nurse." I'm like well, okay, that sounds like letting it control you a little more than I would like.

There are new pills coming out all the time. They just had something come out called Belsomra, that instead of focusing on the parts of your brain that tell you to go to sleep,

it focuses on parts of your brain that keep you awake, and it tells those parts of the brain to shut up at night. "Stop having thoughts, stop talking." I had a sample of that and it worked really well, but it's super expensive right now. I think Ambien, every time I get it refilled, is $3 a month. Whereas Belsomra would be $200 a month.

"I love breakfast food. I never eat breakfast. I'll eat brinner—breakfast for dinner."

That's the most revolutionary sleeping pill that's come out in a while. I think a lot of people with sleeping disorders are going to end up using that in a couple years when it gets cheaper, when they make generics of it or something.

I'm interested to do this sleep study and see if they learn anything else about my sleeping disorder from it.

Have you ever done a sleep study before?
No, because when I was a kid they were saying it would be too stressful. "Of course you're going to sleep bad because we're going to put you in a scary room and attach cords to you. Kids, we don't get accurate results from their sleep studies."

It's actually probably really shocking that I've been on pills or had a sleeping disorder for this long without having to do one, but it was managed with the pills that I had. I was like "nah, I'm good now that I have these." But now that it's kind of getting a little out of control again—I've been waking up way too much during the night—I'm going to see…

The [sleep specialist] was saying it could even be like, what if I don't have Delayed Sleep Phase Syndrome? What if I have this different kind of sleeping disorder that's just always been misdiagnosed as Delayed Sleep Phase Syndrome?

Have you tried smoking weed to fall asleep?
Yeah, and it definitely helps me fall asleep. It does not help me stay asleep.

I use that in conjunction with Ambien a lot of times, to help relax, calm me down, get me to the point where I can fall asleep. But it doesn't keep me asleep at all.

What do you dream about?
I think that's part of the reason I wake up a lot: my dreams will stress me out sometimes.

I wake up and have to tell myself, it's a dream, don't worry about it. I dream about work all the time. I used to dream about Applebee's all the time. I used to constantly think, "I have a test but I have five tables and I just got double sat and none of my food is coming out."

Do you eat breakfast?
I love breakfast food. I never eat breakfast. I'll eat brinner—breakfast for dinner.

Do you wish you weren't nocturnal, or that more people had your schedule?
I definitely wish my boyfriend was on my schedule, because I'll be so ready to talk about our day at 10:30 at night or watch a TV show, and he passes out. And I'm like, "dang. Should I call someone?"

I don't want to be a morning person. I like the nightlife scene. But I wish that society was not so rigidly 9 to 5.

What is your social life like?
If anything, it just makes me better at staying up late and going out with my friends. I'm definitely not the early riser. If anything is going on in the morning, I'm going to skip that.

Do you feel a connection with cats?
Yeah, like hardcore. I don't know if that has anything to do with my sleeping disorder, but I have a cat and I adore him. I've had cats my whole life. I love cats.

Are people usually curious about this?
A lot of times I use this as my fun fact, like "what's something that no one knows about you?" I'll say, "well, I'm actually clinically nocturnal." And they're like, "what?"

You'll have to let us know how it goes with the sleep study.
I always wonder, god, what would it feel like to get a good night of sleep. Every once in a while I'll have a freak night and just sleep like a baby. I'll feel like a different person the next day. What if I slept like that every night? I can't even imagine. Maybe someday. Maybe I will grow out of it in my twenties and maybe then it will be all good.