A sleep study saved my sister’s life, so I got one too. Here’s what I learned.
It was 6am.
I could hear the early morning traffic gradually wake up the sleepy city, and I watched the late-winter sun creep over the horizon on Lake Michigan. The world seemed to stretch its limbs and wipe the sleep from its eyes, and I heard my roommate’s alarm go off in the next room.
But it had been 36 hours since I’d last slept.
This was day five of my seemingly nocturnal new life. Inexplicably, I’d just…stopped sleeping normally. This wasn’t your typical college-senior “I barely slept last night!” complaint; it was a nightmarish hellscape of insomnia that I couldn’t overcome, no matter how many Zzzquils I’d chased with wine the nights before. I’d taken all sorts of pills and potions — yes, including yoga, essential oils, and things that would make even Gwyneth Paltrow gape in horror — yet my body just refused to fall asleep. When I did sleep, it was for only a few hours at a time, at the most inopportune moments of the day, and was rarely satisfying.
My first thought was that it was some kind of prion disease. My next thought was that I really, really needed to see a doctor.
Lesson 1: Adulting means advocating for yourself.
My sister and father had both seen sleep doctors in the past, and discovered they both had sleep apnea — a disorder in which your oxygen levels drop in your sleep and you choke, stop breathing, or hyperventilate without even realizing it. It’s relatively common, especially in people who are overweight or who have a family history of the disorder. Since I really had no clue what was wrong with me, I assumed it could be related to apnea, and figured I’d borrow their doctor.
Making the appointment was easy, though I had to overcome some mild phone-call anxiety in order to schedule a consultation. The doctor only worked on Mondays and Fridays, which was unhelpful since I was smack-dab in the middle of the school year and had classes on both those days. After concocting a reasonable excuse for missing class, I made an appointment for the first Friday he was available — only two weeks later — and filled out some paperwork online.
The forms asked me to describe my current sleeping habits, and I found myself checking off every box. Trouble falling asleep? Check. Trouble staying asleep? Check. Night terrors? Check. Feeling existential dread in the middle of the night? Uh…doesn’t everyone? Check.
To bide my time until my appointment, I managed to secure a prescription benzo from my usual psychiatrist. Powerful as they were, I was told to use them sparingly, as the addiction potential was significant enough to pose a threat in the couple of weeks I’d be using them. They worked wonders, of course, but I developed an awful brain fog that started to impact my ability to do well on tests and complete assignments on time. More than once I found myself zoning out while waiting in line for coffee, only to be shaken into consciousness by the kind-but-impatient barista.
Lesson #2: Some people won’t believe that you’re unwell.
On the day of my consultation, I arrived at my doctor’s office to discover that I was by far the youngest patient in the waiting room. This is typical for me, as I have some chronic conditions that are usually reserved for people over the age of 50, but I was still surprised that more young people weren’t leaping out of their seats to get their sleep under control. Isn’t it my generation that’s always talking about how tired and overworked they are? It dawned on me that people my age probably just accepted their exhaustion rather than seeking treatment for it, and I felt a renewed sense of purpose as I decided I’d become an advocate for sleep disorder awareness, even before I stepped foot in the doctor’s office.
The doctor turned out to be an alumnus of my university, and we talked for awhile about our recent NCAA success. He was calm and soft-spoken, and I could tell he had his doubts about me. Maybe I was trying to get benzos, or maybe I just needed a place to sleep for the night. He thinks I have Munchausen’s, I thought to myself. During the standard “what brings you in today?” questions, I brought up my family history of sleep apnea and his demeanor changed completely.
He began to ask me more in-depth questions about my sleeping habits, and it only took 10 minutes for him to conclude that a sleep study would be hugely beneficial for me. He even talked me through my treatment options if it did turn out to be apnea. A quick exam of my vitals, an escorted walk to the receptionist, one last “go Ramblers!”, and it was over. The next available sleep study wasn’t for another month, but I decided to make the appointment anyway. I was kind of excited; a free hotel room for the night, a nurse to wait on me hand and foot, and all the orange juice I could ever want. What’s not to love?
Lesson #3: Sleep studies are way harder than they seem.
The instructions were clear and simple: Arrive at 8:50 pm with a change of clothes, any current medications, and any entertainment you may need. Oh, and no caffeine within 8 hours of the study. I decided to show up already in my pajamas because I’m shameless. I was one of three people in the waiting room — again, the youngest by about 30 years. The nurse got me last, and brought me into a room to get my vitals, height, and weight. This is easy, I thought. I couldn’t wait to get into bed, especially since check-out time was 5:30am.
My room resembled a basic motel room, complete with a standing fan, a 90s-era TV, a creaky (and kind of smelly) bed, and a nightstand. I had a private bathroom, which was the only area of the room not bugged with a microphone. On one side of the bed was a wall of equipment that reminded me of something out of ET. The nurse gave me a few minutes to get settled, take any meds, brush my teeth, hop into bed…I half-expected her to read me a bedtime story. I flipped on the TV to “Bridezillas” and waited for her to come back in.
She had me stand up and hooked me into each wire. There was a cannula for my nose, a chest strap, a waist strap, countless electrodes attached to my face, chest, stomach, back, and legs, as well as a heart rate monitor on my finger. She also attached electrodes to the back of my head, which left my hair a sticky mess. I made a mental note to pick up some peanut butter on my way home the next morning.
All the straps and wires were borderline torturous. The chest strap was so tight that I felt like I was being hugged by a really aggressive, scaly snake. To make matters worse, she told me that she would be able to see and hear everything I do. A tiny red light in the corner of the room indicated that I was the sole subject of a high-tech camera, and the cannula had a microphone attached to it so she could monitor my breathing.
I tried to make idle conversation while she strapped me in, mostly to calm my own nerves. I asked her if she ever caught anything weird on camera. She listed a few of the better stories: a man who had a sleep-eating disorder, who brought in a bunch of food and ate upwards of 1,000 calories while unconscious; a woman who claimed her husband was levitating and convulsing with demonic activity in his sleep — which turned out to be (sadly?) false; and people who admit their dirty little secrets as they talk in their sleep. She smiled politely when I asked her if she ever got bored of just sitting and watching “normal” people all night.
She told me that if she noticed I was getting apnea, she would come back in with a CPAP machine and conduct a split-study test, meaning she’d monitor me the rest of the night with the breathing machine hooked up. It was optional, but I told her to go for it, since I’m personally a big fan of breathing.
“If you need anything,” she told me, “just say it out loud. I’ll be able to hear it and I’ll come help you.”
The microphone was so sensitive that if I so much as thought about asking her to help me, she’d be able to pick it up and arrive at my room within minutes. Not literally, of course, but it could easily pick up the smallest whispers and subtlest movements. She told me not to get up to use the bathroom without calling her first, since she’d have to unhook me from the wall and make sure I didn’t rip out any wires. I intentionally avoided drinking a lot of water that night to spare myself the embarrassment. I got into bed, was plugged into the wall, and was told that there were just a few more technical tests we had to do before I could relax. A few minutes after she left the room, the mic came on and I heard the nurse call my name over the intercom.
“Can you hear me?” she asked.
“Loud and clear.”
She walked me through some eye-movement and deep breathing tests. She had me pretend to snore so she could get a baseline for my sleep sounds. God, please don’t let me do or say anything embarrassing in my sleep, I thought to myself. If she can see my pupils dilating and moving from all the way across the room, she can see everything.
Once the test was finished, she bid me goodnight and told me to just do whatever I’d normally do before bed. I’m a massive scaredy-cat, so I kept my lamp on and turned up the TV to block out the sounds of the thunderstorm outside. I scrolled through all my usual apps, waiting for the benzos to kick in. About an hour later, right around 11 pm, I felt ready to close my eyes. Okay, I thought, this isn’t so bad. Let’s just enjoy the quiet night away from home. This is kind of nice, actually. I started to feel almost content.
It didn’t last long.
I tossed and turned, trying to find a comfortable position with all the expensive tech equipment strapped to my body like I was some kind of lab rat. If I turned this way, the electrodes pulled at my legs. If I turned that way, the straps made it harder to breathe. If I laid still, I couldn’t pull myself under the blankets enough to get comfortable. The heart rate monitor was making my hand all sweaty, and I fought the urge to remove it. I eventually decided to just lay there and try meditating, using the white noise of the fan to guide my thoughts somewhere more pleasant.
Hours passed. I drifted in and out of sleep, and felt each time that I was just barely on the cusp of consciousness. Right as I was about to go back under, I heard the door open and nearly jumped out of my skin.
“You pulled one of the wires out,” the nurse said she plugged me back in. “How are you doing so far?”
“Okay I guess. Do you mind if I run to the bathroom?”
She unplugged me and gave a couple minutes of privacy, telling me that she would see on the camera when I was back in bed and ready to get re-plugged. Once I was, I asked her how everything looked. To my surprise, she told me I was sleeping really well.
“It doesn’t feel like it,” I muttered.
I got settled and decided to sleep closer to the equipment so she wouldn’t have to keep adjusting me. I checked the time on my phone and saw that it was 2am — that meant if I fell asleep soon I’d only be getting about three hours of sleep. But the sounds of the storm outside, coupled with my discomfort, kept me wide awake. I texted my boyfriend and asked him to reassure me that the noises weren’t ghosts — irrational, I know, but that’s what happens when you’re operating on less than 4 hours of sleep a night. He told me to just relax and that I would be home soon. I switched on the TV to “Cupcake Wars” and pretended I was in some magical land far away from there.
The next thing I remember is the sound of the door opening and hearing the nurse gently but firmly wake me up. I checked my phone: 5:45am. I thanked her for letting me sleep in. She told me I could take my time getting up as long as I was out the door by 6:30. The relief I felt as she unstrapped me could only be compared to that feeling of stepping inside a cold room after waiting in the lung-compressing heat of a Southern California summer. She let me know the mic and cameras were off, and offered me some orange juice. I gratefully took it and thanked her one last time before getting in the shower and spending a good fifteen minutes just working the electrode jelly out of my hair. Still groggy and crusty-eyed, I drove home in the early morning darkness.
Lesson #4: The results aren’t the most important part…
It took me over a month to get to my follow-up appointment, as the semester was wrapping up and missing classes became less acceptable, even for a reasonable request like a doctor’s visit. I remembered that my nurse hadn’t hooked me up to a CPAP, and I hadn’t gotten any urgent phone calls asking me to come in for a fitting right away, so I felt confident that I wasn’t dealing with anything serious. This was good news, since CPAP machines can cost thousands of dollars, and there is nothing sexy about sleeping next to someone with a glorified Bane mask on.
The doctor invited me in, casual as always, and sat me down. He pulled out my results and gave me the news: there was nothing wrong with me.
The peaks and valleys of my heart rate and oxygen levels were totally normal, and I’d even gotten a good three or four REM cycles in during the night. I just didn’t understand how that was possible. I felt like I barely slept at all! But science is science, and these tests showed a perfectly healthy young adult with no sleep disorder detected.
I sighed, and told him I supposed no results were good results. He corrected me: these were results, they were just healthy results. He told me that my sleep troubles were likely psychological, and said he could recommend some doctors at their behavioral sleep center, but that he knew I was already seeing a therapist and psychiatrist to work through the problems that may be contributing to my insomnia.
“Better luck next time,” he joked. I thanked him and wished him well before leaving the facility.
Since a couple months had already passed between when I made the initial appointment and when I got my results, I had already begun feeling better and sleeping more normally. I noted that school was wrapping up and my job prospects were looking optimistic, so my stress levels were far lower than they were before. I chalked up my sleep issues to anxiety and made sure to schedule an appointment with my therapist for the following week.
Since then, my sleep has never been better.
…the important part is what you do with those results.
Not having sleep apnea is something to celebrate. Seeing the issues it’s caused other members of my family, I dread the thought of living my life in a sleepless haze, constantly waking up gasping for air, snoring like a living lawnmower, only getting reprieve from a toaster-sized oxygen machine next to my bed.
I’d seen my sister walk around in a haze, do poorly in her courses, even get into several minor car accidents, all because she was unwittingly getting less than three hours of real sleep every night. Once she was formally diagnosed and given a breathing machine, she was like a new person. She was not only a better student and driver, but she was generally more pleasant to be around. I don’t know what would have happened if she hadn’t gotten diagnosed so early. In all honesty, my fear is that she would have accidentally hurt herself or someone else just from sheer sleep deprivation.
But you have to remember: she didn’t even know she had sleep apnea. She knew she was an awful snorer, mostly because everyone told her she was, but at only 24 years old she could have easily gone another 30 before realizing something was wrong. Who knows if she even would have made it that long?
Sleep apnea doesn’t just cause brain fog and clumsiness. It can contribute to heart problems, cognitive dysfunction, acid reflux, weight gain, and asthma. These side effects are combined with being five times more likely to get into car accidents. Did I mention that my sister didn’t even know she had it?
This is why I firmly believe that everyone should do a sleep study. If you don’t have sleep apnea, you may find you have restless leg syndrome, sleep-eating syndrome, narcolepsy, or any number of sleep disorders. And you also may find that you have nothing wrong with you at all. The latter is just as valuable a result as any of the others listed, because it means that if you’re still having trouble sleeping, you may have some behavioral or psychological barrier that’s getting in the way. Once you know that, you can take the next steps to pursue short and long-term treatment.
There’s no shame in seeking answers before you know the question. If anything, it’s good practice for when you have to advocate for someone else later on in life, be it your parents, your spouse, or even your pets. That doesn’t mean you should put yourself deep in debt undergoing tests your insurance won’t cover, but if it doesn’t require you to expend an excessive amount of emotional labor or half your life savings, there’s no reason not to get tested.
If you’re interested in setting up your own sleep study, start by making an appointment for a consultation at your local sleep medicine facility. Many universities also offer free sleep studies to help medical students with their research projects. Make sure you come prepared for the long night ahead, and don’t do the study if you have sensory issues or have a medical condition that prevents you from safely participating, such as certain heart conditions or epilepsy. Some facilities let you do sleep studies from home, but those have limited results and usually less effective than in-patient studies.
Once you have your results back, you can start implementing the necessary changes so you can get on the right track to overall health and wellness. Do yourself a favor and spend seven sweaty hours in a heavily-monitored hotel room. Trust me — you’ll be glad you did. I know I was.