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From Issue #11 February 28, 2013

Heavy Breathing

The terror of waking not breathing, over and over again, can be assuaged with a bit of hardware.

By Chris Higgins Twitter icon 

In 2007, I slept in my car every day at lunch. I wasn’t drunk, homeless, or depressed. I was exhausted.

After each sleepy morning chugging coffee and writing software, I’d stumble two blocks to my car (parked under a bridge) and sleep there with the seat tilted all the way back. I played Morrissey’s weary Vauxhall and I on my iPod as I drowsed in and out of consciousness. My greatest concern was that cops — or, worse, co-workers — would tap on my foggy car window and try to rouse me.

But that never happened. I just eked out a crappy hour’s sleep and trudged back to work. I spent most of every weekend asleep, with a few hours awake in the morning and evening to eat a freezer pizza and catch up on TV. I stopped going to parties and stopped visiting friends so I could sleep. I canceled dates so I could sleep. On my birthday, I took a day off and slept in celebration.

All that sleep never helped. I was always tired.

The Darth Vader machine

I had no idea this was unusual, because I’d been doing it for years and I lived alone. When I finally mentioned my sleep habits to my doctor in July 2008, she urged me into a sleep study. That entailed spending a night in a sleep lab run by Oregon Health & Science University (OHSU). I slept in a modified hotel suite, sensors glued to my scalp and face and chest and legs, all of which were wired to a “head unit” that looked like a hobby kit from Radio Shack circa 1985.

As I slept, technicians watched on infrared cameras and listened on microphones attached to my neck and above the headboard. No pressure. When I left the study I ate the free continental breakfast in the lobby — then I went home and took a nap.

I was diagnosed with obstructive sleep apnea. The condition occurs more often in the overweight and obese (like me) than in those with healthy body-mass indexes, although it’s not uncommon for the svelte. When we slip into the deeper stages of sleep, our neck muscles lose their tone and go fully slack. For some people, and often only at some points in their lives, the soft tissue at the throat collapses enough to block the airway. I was one of them.

The sleep study revealed that I had an AHI (apnea-hypopnea index) of 48. The AHI provided a rough measure of how often I stopped breathing or suffered other sleep interruptions, and it’s partly how doctors diagnosed that I had sleep apnea. An index of 48 is “severe”; it meant that, on average, I stopped breathing for 10 contiguous seconds out of every 85.1 Each apnea event meant I’d rouse myself and shift slightly in order to breathe again. That’s why I wasn’t getting any benefit from all that sleep; in fact, sleeping was harder on my body than being awake.

The hospital prescribed a continuous positive airway pressure (CPAP) machine. I picked it up at a creepy “durable medical equipment” warehouse out by the airport, where I sat through an hour-long course on how to press its two buttons and clean its three parts, and I was sent home with equipment that cost well over $1,000.

My CPAP machine is a lunchbox-sized gray box with a long plastic tube running out of the top. The tube connects to a “nasal pillow mask,” a medical euphemism for a set of silicone nose plugs that I strap to my face with blue elastic bands running around my head. The nose plugs have big holes in them, and from those holes comes a continuous stream of pressurized air. Other people may use what looks more like an oxygen mask: either a nose mask that leaves the mouth exposed or a full nose-and-mouth mask.

This air acts as a stent, forcing open the slack soft tissues around my airway despite the unfortunate anatomy of my neck. The CPAP machine itself gently breathes with me, like a tiny bedside Darth Vader. Severely afflicted people may need a BPAP (bilevel) machine, which can be set for discrete air pressures while breathing in and out. The CPAP incorporates a humidifier, which I dutifully fill with distilled water before bed each night.2

Using the CPAP machine was, at first, screamingly difficult. Just putting on the mask meant closing my mouth and blocking my nose with the mask’s plugs. My brain gasped suffocation! despite the flow of air through the mask. It was the same sensation I’d had as a teenager snorkeling in the Gulf of Mexico and going down for a brief dive — except I was still breathing. I sat there on my bed, telling myself over and over, “You are not suffocating. See? Air is flowing, everything’s cool.”

I had a strong motivation to cope with the CPAP machine. Not only could I get refreshing, deep sleep, but I also lived with the frightful knowledge that there’s a strong correlation between sleep apnea and both high blood pressure and heart disease — and possibly cancer. And although obesity can be a cause of sleep apnea, sleep apnea can also cause or exacerbate obesity! I was obese when first diagnosed, and I saw sleep as one step toward recovery.

After half an hour I’d get over my suffocation panic, lie carefully on my side as I’d been instructed to, and wrap the creepy hospital-style plastic air tube around the edge of the bed. As a way to lull myself to sleep, I played podcasts on bedside speakers. My sleep doctor insisted that listening to anything around sleep time was poor “sleep hygiene,” but clearly he was not familiar with public radio. Given my level of exhaustion, sleep usually came within an hour. When it didn’t, I’d pop an Ambien.3

Comply with the machine

I have slept with my CPAP machine since the first night I received it. I mean that literally: I have not taken a nap on the couch; I have not fallen asleep in a movie theater, car, or plane; and I take the machine with me everywhere I intend to sleep. This means I am very “compliant” — I use the machine consistently — but it also makes me a rare bird.

I asked Dr. Radhika Breaden, MD, MPH, a sleep-medicine physician in my city of Portland, Oregon, to put my level of compliance in context. “Probably 25% of the patients can get to that point within that first few weeks,” she said. “There are some people who take it home, put it on that first night, rip it off during the night and say, ‘There is no possible way that I am going to use this again.’” I became compliant on the first night, but my father is a night-ripper.4

Dad was diagnosed with sleep apnea early in the 1990s after a drive during which he appeared to fall asleep at the wheel of our ancient Buick LeSabre and briefly encountered the median strip of a Florida highway. (Dad remembers his vision blacking out but remaining conscious; mom remembers him falling asleep. Either way it was scary for everyone.) No one was hurt, and the Buick barely seemed to register the incident, but mom certainly did. She took charge and got us to our family doctor’s office, fearing that dad had suffered a stroke or a low blood sugar incident. After some tests, our doctor referred dad to a sleep clinic.

Dad was left untreated, as CPAP machines weren’t common for home treatment 20 years ago.5 So father and son engaged in epic snoring contests, largely unaware that we had sleep disorders and were accepting weird sleep habits with peculiar ease. (Dad typically leaves bed halfway through the night and spends the remainder sleeping in an armchair; he is also an inveterate post-lunch napper and exhibits classic sleep apnea behavior, including gasping that audibly interrupts his snoring.)

Within months of my diagnosis in 2008, Dad was re-diagnosed. Although he lives 3,000 miles away, we were independently prescribed the same machine and same mask with the same “nasal pillows” (size: large), and we dialed in to similar air-pressure settings. He gamely tried to use his, but at night he’d rip off the mask. Not long ago, I visited my folks and found his machine in a drawer and him asleep in the armchair, sawing logs.6

Have CPAP, must travel

CPAP machines are reasonably portable. I’m now using my second machine (the first suffered a humidifier failure after three years), and it’s smaller and quieter than the first. It weighs a few pounds and comes with a crappy carrying case. Taking it all apart and packing it takes less than five minutes.7

Airports vary in their treatment of CPAP machines. I’m routinely chastised for doing something wrong, despite complying with whatever I had been told by the most recent TSA agent. The short version is that the machine must be carried on (don’t check it as luggage or gate-check it, because it’s fragile), it must be scanned like any other bag going aboard, and you probably want to put the machine in its own plastic bin (having tried all the possible options, this is the least risky). You might have to get it swabbed for explosives residue despite all this. But because it’s medical equipment, the CPAP machine doesn’t count against your two-item carry-on limit. It’s also small enough to cram in even the smallest overhead compartments, or under a seat alongside a small laptop bag.

I have not camped since starting CPAP therapy, although I have spent a few nights in an RV (with power for the machine). There are options for outdoorsy CPAP patients — either power the machine with a battery or use one of several non-electrical gizmos that may perform a similar function.8

There are lots of non-CPAP options for sleep apnea treatment. Most intriguing is a weirdly low-tech solution from Provent called EPAP (expiratory PAP), which comprises two disposable valves with adhesive. You stick one over each nostril and use it for a night. If you keep your mouth closed (the company says this is natural when you settle into sleep), it causes pressure to build up behind the valves in your nostrils, resulting in a light CPAP-style effect just from your own exhalation. It’s not considered as good as a CPAP machine, but for those who can’t “comply” or for travelers, campers, or people who frequent places without power and batteries, it might be an option. Each pair of valves costs about $2 and can’t be reused. I haven’t tried any; my CPAP works too well.

I will nap no more forever

The first week sleeping with CPAP brought two unexpected nighttime changes: powerful nightmares and no more getting up to pee. The nightmares likely had to do with finally having uninterrupted REM sleep, and they subsided after a few weeks. The nocturnal peeing turned out to be a side effect of sleep apnea. One way for the body to dump CO2 is via urine, and I was building up carbon dioxide by not breathing properly.

Those benefits have lasted, as has an aesthetic one: I no longer snore. Even better, over the course of two years I dropped 30 pounds, largely because I stopped sleeping all the damn time and my metabolism started working more efficiently.

When I started sleeping with the Darth Vader Machine, I worried that I’d never get a date again. I was ashamed of the strange hospital-ish gear by my bedside. I wrapped the air tube in a soft gray cozy, which made it look a little less medical (and reduces a kind of internal precipitation). I’m now engaged, and my fiancée never batted an eyelash at the CPAP machine. She also has never heard me snore.

And Dad has plugged in his CPAP machine again; I interviewed him by email for this story, and he replied, “I routinely return to my office after lunch, sit back in my reclining chair, and nap for 10–15 minutes. Not to do so is to expect sleepiness later in the workday.” If his treatment ends up like mine, those naps will be erased from his routine, like my car naps from 2007.

Postscript

An estimated 15 to 30 million Americans may suffer from sleep apnea, most undiagnosed. If you can’t routinely obtain restful sleep at night, talk to your doctor and check out sleepapnea.org. Technology to diagnose and treat sleep disorders has come a long way in recent years: I did a sleep study in 2005 that was inconclusive, prior to my successful study in 2008. Your doctor or a sleep center may even first send you home with a pulse oximeter (it measures blood oxygenation) that you tape onto a finger before sleep; it can provide clues that lead to a full-blown study.

It’s also crucial to emphasize that sleep apnea is not confined to fat people like me; Dr. Breadan noted that 40% of sleep apnea patients are not overweight, which is a surprise to many primary care doctors.

This article comes with Special Features.


  1. AHI is just one way to measure sleep incidents. The more holistic measure is RDI (respiratory disturbance index), which also includes sudden changes in sleep that aren’t classified as apneas (pauses in breathing) or hypopneas (shallow or slow breathing). Sleep studies these days look at RDI as the more interesting number. My home CPAP machine detects AHI events and records them. My AHI is currently 0.7 while using CPAP. Anything below 5 is considered “normal.” 

  2. The humidifier heats and evaporates the water, making the air blasting down my throat pleasantly warm and moist. Tap water can leave residue (which eventually cruds up the humidifier chamber and possibly other parts of the system), but distilled water does not. I started out buying one-gallon jugs of distilled water at the grocery store, until my parents gave me a home distiller for Christmas. 

  3. Tip: Don’t shop on your smartphone while using Ambien. For the first week, I’d take the pill, then fiddle around on my phone. As Ambien rapidly destroyed my impulse control, I’d find my way to my Amazon Wish List and order crap for myself, including one notable shipment of 9,000 live ladybugs for my garden. When the bugs arrived two days later, I had no memory of ordering them. I learned to put the phone on the inconvenient side of the bed, and take Ambien only when I was truly ready to close my eyes. 

  4. Medicare and some insurers (including mine) require that you use a CPAP machine for a certain percentage of your sleep hours during the first weeks or months of having it in order to get it paid for. The machines have memory cards that store detailed records of use, mostly for troubleshooting. My current machine has a cellular modem that auto-uploads data to my insurance company, or to Skynet for all I know. Many people return CPAPs within a few weeks, which is why there’s a thriving market in sterilized used units. In my case, the first six months of using the machine was effectively a rent-to-own scheme, with my insurance deductible acting as the “rent.” 

  5. My father wrote, reflecting on that time, “I spent the night at the sleep center and when I awoke was told that yes, I did have sleep apnea. My family doctor, faced with this diagnosis, said that the only cure was soft palate surgery, and that there was no surgeon in Florida he would trust to do it well, and that was the end of it.” Surgery and “oral appliances” were once the only option, and even today they typically only work for those with mild apnea. I had my tonsils removed in late 2011 for unrelated reasons, and that reduction in my interior neck-flab significantly reduced my apnea symptoms. The surgery was brutal, though, and I don’t recommend it simply for apnea treatment. 

  6. Editor’s note: Your faithful editor has used a CPAP since a week before his honeymoon in 2002, and his father, like Chris’s, was diagnosed recently and has since been wrestling with his machine.–gf 

  7. Editor’s note: Your editor is on his third CPAP (they wear out) in 10 years, and it weighs about one-third as much as the first, takes up about 75% as much space, is about 25% as loud, and produces seemingly 10 to 20 times as much data for sleep therapists to analyze for check-ups.–gf 

  8. At home, I plug my CPAP machine into a small UPS (uninterruptible power supply) to make sure it survives power outages. If I had to do without it for days (like in a major power outage), I’d live — though my sleep would be crappy. 

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