Breathless in the night; the struggle to treat sleep apnea

During the day, I was so tired my knees would buckle. Driving, my head would dip. I had to catch myself.

At night, I would sleep fitfully, then snap awake with a start, gasping, heart racing.

My doctor ordered blood tests, urine tests, an electrocardiogram. Maybe, he thought, it was heart disease. Those nighttime palpitations....

But my heart was fine. My blood was fine.

He ordered a colonoscopy — I was 47, almost time for my first one anyway. My colon was clean, too. No cancer. Not even any worrisome polyps.

However. There was one thing.

“While you were under,” the gastroenterologist said, “you stopped breathing at one point. You might want to check that out. It could be sleep apnea.”

It was late 2008. I had never heard of obstructive sleep apnea. Many hadn’t. But we would.

For most of history, medicine hardly considered sleep as anything beyond the realm of dreams, during which the body repaired itself in some ineffable way. Since the mid-20th century, though, sleep increasingly has become the subject of study. We now understand it is a complicated condition, very different from waking reality.

Sleep is marked by dynamic changes throughout the body. Breathing regulates. Blood pressure and body temperature fall.

And there is a “very significant loss of tone of most major muscle groups in the body,” says Dr. Wallace Mendelson, former director of the University of Chicago’s Sleep Research Laboratory and a former president of the Sleep Research Society.

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While nighttime slackening of muscles is not particularly significant when it comes to, say, the legs, the muscles of the throat can relax so much during sleep that the tongue lolls backward and the airway they support collapses.

The result is obstructive sleep apnea — from the Greek “apnoia,” for “breathless.”

With OSA, the sleeper’s supply of air is continually interrupted, causing oxygen levels in the blood to plummet. The sleeper stirs, gasping to breathe. This can happen hundreds of times a night, and the ill effects are many and severe.

Apnea puts strain on the heart, which has to work harder to move the less effective, deoxygenated blood around the oxygen-starved tissues of the body. That increases the risk of cardiovascular disease, hypertension and stroke. Studies suggest that 38,000 Americans die of heart disease worsened by sleep apnea.

Apnea increases acid reflux, causing indigestion and increasing the risk of esophageal cancer. By affecting glucose metabolism, apnea promotes insulin resistance that leads to Type 2 diabetes and encourages obesity.

Then, there is the exhaustion of never having a full night’s sleep, causing memory loss, anxiety, depression and inattention that contributes to traffic accidents — a 2015 study of Swedish drivers found that people with apnea are two and a half times as likely to get in car accidents as those without — as well as absenteeism. People with sleep apnea also get fired from their jobs far more frequently than those who don’t have the condition.

It’s estimated that nearly 1 billion of the world’s 8 billion people suffer from mild to severe sleep apnea, according to the first global study of the ailment, published in The Lancet in August.

Yet there is no genetic marker for sleep apnea. No virus, no telltale bacterial infection. Like sleep itself, OSA is a condition. While there are risk factors — obesity, high blood pressure, a large neck or large tonsils, small jaw — apnea does not present itself until after an individual falls asleep and stops breathing. The only way to diagnose the ailment is to observe someone sleeping.

This was a surprisingly significant impediment to research.

“There was no tradition of staying up at night to carry out scientific research,” wrote Dr. William C. Dement, who started the Stanford University’s sleep center, the world’s first. “Except, of course, for astronomy.”

Prodded by exhaustion and the suggestion from the doctor overseeing my colonoscopy, and with other possibilities having been ruled out, I made an appointment in early 2009 at North Shore Sleep Medicine. My doctor had suggested the place, but I was dubious. The facility was not in a hospital or even a medical building but in a brick house that had been converted into a clinic on a residential street in Skokie.

But I was met by an actual doctor, Lisa Shives, a pulmonologist with a degree from the University of Chicago’s Pritzker School of Medicine.

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She peered down my throat, then suggested a polysomnogram — a sleep study during which my breathing, blood oxygen levels and brain activity would be monitored and recorded. The polysomnogram cost several thousand dollars, but my insurance would cover it. If this were some new form of midnight quackery, I doubted Blue Cross/Blue Shield would foot the bill.

I returned a few weeks later, on a Thursday at 9 p.m., an odd time for a medical appointment. I rang a doorbell. A technician showed me in to a small bedroom containing a double bed and an armoire. Behind the bed, a window looked into a lab-like room stuffed with equipment.

I sat on the bed, took off my clothes, hung them in the armoire, put on some flannel sleep pants and called in the technician, Gilia, a young Romanian woman in blue latex gloves, who stuck electrodes all over my chest and head, then gave me a fishnet shirt to put on to hold the wires in place.

I caught sight of myself in the mirror. There usually isn’t a one specific moment in a man’s life when the last vestige of youth definitively falls away and he becomes irretrievably middle-aged. But seeing my haggard, round face, electrodes held on by squares of tape on my forehead, my cheek, my chin, the wires snaking behind my left ear, my chest also sprouting wires, all in this odd, clinical parody of a bedroom, I felt the chill of senescence descend.

“A bad look,” I muttered to my reflection.

Gilia vanished, taking up a position behind the glass. Gingerly trailing wires, like a tethered beast, I rolled into bed between the crisp, white sheets, read a magazine for a few minutes, then, around 10 p.m. clicked off the light and, miraculously, soon fell asleep.

I woke up, fished my watch from an end table and held it to my face: 4:30 a.m. More conversation. I fuzzily volunteered to try to go back to sleep, but Gilia said they had their six hours of data and that I was free to go.

Freed from the wires, I took a shower, using baby oil to scrub off the adhesive from the electrodes. After I got dressed, Gilia told me my apnea was “severe.” Dr. Shives would give me the details later.

I had planned to take myself out for a celebratory breakfast after my sleep test. Instead, I just went home. I wasn’t hungry. I was scared.

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A few weeks after my sleep study, I was back at North Shore Sleep Center in the daytime. Shives sat me down in front of a screen full of multicolored squiggles and numbers, with a small black-and-white video of myself sleeping in the corner. Few people get the chance to watch themselves sleep — there’s something unsettling about it, like seeing a crime scene image of yourself, dead.

Speaking of death, I had stopped breathing, Shives said, for as long as 112 seconds — nearly two minutes. A normal reading on a pulse oximeter is between 95 and 100 percent blood oxygen saturation. Those with chronic obstructive pulmonary disease might have a reading in the upper 80s. Mine dipped at times to 69 percent.

How bad is that? The World Health Organization, in a guide for medical personnel, suggests they immediately check whether a patient’s airway is blocked, a lung has collapsed or their heart has stopped beating if oxygenation falls to 94 percent or below.

My options were few. I could have a uvulopalatopharyngoplasty, a procedure as ghastly as its name: removing tissue from my soft palate and widening my airway at the back of my throat. But it was bloody, and recovery could be long and troublesome. Shives raised the possibility only to immediately dismiss it as too hideous to consider and perhaps, I later suspected, take the sting off the second option: the mask.

She ushered me in to a side room where one wall was lined with shelves of Styrofoam heads, each wearing a clear, blue-tinted, plastic mask, held on by elastic straps around the temples, down the forehead and between the eyes. Some masks were large, covering the nose and mouth, some smaller, covering just the nose, the masked nose slightly comical, a high-tech clown nose.

All were somewhat tinctured with horror, like heads stuck on pikes. Screaming and fleeing the office didn’t seem the path of the hero, though.

I tried on a mask. It fit.

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In the first decade and a half after OSA was identified, there was only one treatment option. You could have a tracheotomy — a surgical procedure in which a hole is cut low in your throat to allow air directly into the lungs, bypassing your collapsing upper airway. The first tracheotomy to treat OSA was performed in 1969. It offered reliable relief but had complications of its own, and doctors considered it only for patients in severe and immediate distress.

“In the early days, doctors didn’t know much,” says Dr. Alan Schwartz, who recently retired as a professor of medicine at Johns Hopkins University in Baltimore after years of pioneering exploration on sleep ailments. “In the ‘80s, when I began, doctors were really not attuned to this problem. We were seeing the tip of the iceberg, the most severe apnea patients, who were gasping, snoring, choking during sleep, struggling to breathe. Tossing, turning, kicking, thrashing, jerking, tearing sheets up. They’d wake up with a headache, from their bodies’ tissues not getting enough oxygen, feeling very fatigued, as you might expect. They’d become depressed. There were mood changes, short temper.”

The life-altering drawbacks of tracheotomies inspired Colin Sullivan, a post-doctorate research fellow from Sydney University, to invent the Continuous Positive Airway Pressure machine, or CPAP, that would become the ubiquitous first-line treatment for apnea.

He had gone to Toronto University to aid Dr. Eliot Phillipson in his research on respiratory control in dogs during sleep. Returning to Australia, Sullivan designed a mask that could fit around the snout of dogs.

A human patient, scheduled for a tracheotomy and, in Sullivan’s words, “eager to know if there was anything else that might work,” inspired him to try to modify the dog mask for use with people.

Sullivan did not invent the idea of blowing air into patients’ lungs. That goes back at least to 1936, when London physician Dr. P.E. Poulton wrote in The Lancet about how he treated acute pulmonary edema with pressurized air. Poulton found “an Electrolux or Hoover vacuum cleaner answers the purpose,” reversing it to blow through a regulator to maintain pressure and into a mask. (Perhaps this was a reflection of the Great Depression then in full cry, but Poulton, incredibly to today’s sensibilities, did not mandate using a new vacuum cleaner to treat patients. Rather, he suggested that, “when the household vacuum is employed, the machine should be run for some minutes first of all to get rid of dust.”)

Sullivan patented his device, but it took almost a decade to bring CPAP to apnea patients outside a lab. Revenues for its first fiscal year, 1990, were less than $1 million. In 2018, ResMed was an S&P 500 company with revenues of $2.3 billion and 6,000 employees in 100 countries.

Millions now find relief with CPAP machines, though success often requires perseverance.

“There was an adjustment period,” says Dr. Steven Frisch, a Chicago-area psychologist who began using the mask in 2002. “The first two years, not every night but often, I would wake up, and the mask wasn’t on me. I don’t have any memory of taking it off in the middle of the night.”

Once he got used to the mask, his condition improved dramatically.

“The benefits of it are I get a more restful sleep,” Frisch says. “I sleep for longer periods of time within the night. I don’t wake up with a racing heart. I don’t wake up gagging for air the way I do during the day when I nod off.”

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But as more patients were treated and the CPAP machine’s technology was refined — CPAP machines now can upload data automatically to the cloud, where it can be analyzed — octors made an unwelcome discovery: Their primary treatment often didn’t work in the real world.

“In the late ‘80s, we’d sit down with a patient and ask, ‘How’s it going with the mask?’ ” And they’d say it was going wonderfully,” Schwartz says. “Until we began to put electronic chips in the machines in the late ‘90s into the 2000s, we never appreciated how little they were using their machines.”

The chips tracked how long the machines were used and found they frequently weren’t being used at all.

“The mask is like something from a bad science fiction movie: big, bulky and obtrusive,” The New York Times wrote in 2012, citing studies suggesting that half of CPAP users completely abandon the machines within three weeks of getting them.

Half of patients found the mask uncomfortable, claustrophobic And that was only within the first month.

I certainly did. The CPAP did make me feel better the first night I wore it — again under observation at the sleep center. I awoke refreshed, alert, feeling more energized than I had in years.

But the positive effect of the mask tapered off considerably after that first deliciously restorative night. Outside of the lab, I couldn’t reproduce the benefits.

The “C” in CPAP is for continuous, meaning that it pushes air when you breathe in. But the CPAP also pushes air when you breathe out. You are fighting against it as you exhale, and I would wake up suffocating.

Then, there was the continual embrace of the mask, clamped to my face. Air would leak out around the edges and dry my eyes, even though they were closed.

And there was the unspoken shame of getting into bed next to my wife and tethering myself to this breathing machine with what looked like a ribbed hair dryer hose. She tried to put a bright spin on the situation.

“You look like a fighter pilot!” she said,gamely.

“A lot of people are familiar with CPAP, can use the word CPAP and don’t cringe,” Schwartz says. “It’s not some draconian mask. They know someone who has it. It’s become much more commonly accepted that a lot of people are sleeping with these CPAP masks, to the point now that’s it’s become almost expected. Twenty years ago, following 9/11, you’d have to explain to TSA what CPAP is. Now, CPAP is allowed; there’s a placard.”

But I was part of the 50 percent of CPAP users who couldn’t make things work with them. Most nights, at some point I would wake up and rip the mask off. In the morning, I would check the stats, which the machine dutifully recorded, and see how little it was working.

I went back to North Shore Sleep, where Shives fiddled with the pressure settings and encouraged me to try other masks. I went back several times and began to feel like a regular. But nothing seemed to work.

Finally, Shives, exasperated, said, “You know, if you lost 30 pounds, the problem might go away.”

That seemed like a plan.

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“In terms of therapeutics, CPAP really was such a huge success in the laboratory,” Schwartz says. “When it was first rolled out in the mid 1980s ... its effects on apnea were so dramatic in the laboratory, and the patients were so sick everyone really wanted to believe that it would work. It took 10 or 15 years to realize, yeah, it would work in the laboratory.

“But, at home, there were comfort issues, the cumbersome nature of sleeping with a mask under pressure. We’d try different pressure profiles. Maybe you need more humidification, maybe this, maybe that. But the truth of the matter is a large segment of the patients can’t use it. Alternatives are needed — the so-called critical unmet need.”

A series of new treatments has been rolled out over the past two decades trying to meet that unmet need, each offering its own particular benefits and drawbacks.

In the mid-1990s, a dental appliance began to be used by those who couldn’t tolerate the mask.

“Obstructive sleep apnea happens in the back of your mouth,” says Dr. David Turok, a Northbrook dentist with a practice concentrating on sleep apnea. “Basically, your tongue doesn’t have enough room in your mouth and pushes back into your airway. In my opinion, apnea is very much a dental problem. CPAP forces the tongue out of the way by forcing air down. An oral appliance brings the lower jaw forward, and the tongue comes with it.”

Think of it as a plastic brace, using upper teeth as an anchor to push the lower teeth and with them the lower jaw forward, creating an airway at the back of the throat.

Treatments are moot, though, if you don’t know you have OSA. Turok says that since apnea still goes undiagnosed in so many for so long, dentists have an important role to play in identifying the problem.

“Sleep apnea is very much an oral condition,” he says. “Not every dentist should be treating sleep apnea, but every dentist should be looking for it. We’re looking down the back of people’s throats much more than any physician.”

One treatment strategy is, in essence, an electrical version of the oral appliance: hypoglossal nerve stimulation — marketed on the radio as the “Inspire” system — in which a small electrical charge is used to make the tongue contract and keep it from lolling backward during sleep.

“We started the original work about 20 years ago,” says Dr. Philip Smith, a professor of medicine at Johns Hopkins Medical School and an expert in pulmonary disease and sleep apnea.

It uses “a very small pacemaker, the same as a cardiac pacemaker” — a wire that loops around the hypoglossal nerve, which controls the tongue. The device is implanted in soft tissue just below the collarbone, the electrical lead is tunneled under the skin, and just below the jaw a cup is placed around the nerve. The patient activates it before sleep by pressing a button on a remote control.

“If you are awake, you feel your tongue is stiffening up or moving a little bit forward,” says Schwartz, who has consulted for companies exploring HNS. “In general, patients sleep through it really quite well.”

Great Britain’s National Institute for Health and Care Excellence, though, has urged caution, saying the evidence of its safety and efficacy “is limited in quantity and quality.”

In 2010, I decided to lose the weight. I had a goal — the 30-pound figure Shives recommended. And I had a plan, what I called the “Alcoholism Diet.” In 2006, I had stopped drinking, learning two vital things about shedding sugar or addictive substances like alcohol.

First, you need to cut them out — not a bit, not mostly, but entirely. You can’t drink just a little; it doesn’t work. You have to eliminate the danger completely. Ditto for high-calorie foods. So no cookies, cake, candy, ice cream or doughnuts. Zero. To check myself, I counted calories and vigorously exercised.

The second important factor was time. Being in recovery for a month is meaningless. The weight took years to go on, I had to give it time to come off — a full year to lose the 30 pounds. And I did it, going from 208 pounds on Jan. 1, 2010, to 178 pounds the following Dec. 31.

It helped that I had a sharp opener I planned to use in my newspaper column crowing about the triumph, but only should I succeed. “Unlike you, I kept my New Year’s resolutions...” I wrote.

“Weight loss is curative,” Smith says. “The problem is, people can’t do it.”

Which underscores the enormous difficulty of dieting. Even being unable to breathe at night, even being confronted by the need to wear a suffocating mask or have an electric device implanted alongside your clavicle or running the risk of developing cardio-vascular disease paired with exhaustion, most people still can’t take weight off and keep it off.

I took the weight off. But the pounds I thought I had lost somehow found me, creeping slowly back on over the next decade: 20 of the 30 pounds I had shed.

Along with the weight, the apnea came back. Not that I realized it until the summer of 2019, when I underwent spinal surgery. The presurgery questionnaire at Northwestern Memorial Hospital in Chicago asked if I sometimes snored, if I often was tired, if I ever had been diagnosed with sleep apnea.

Yes, yes and yes.

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“It’s important to screen people for sleep apnea because it could be a risk when having surgery,” says Dr. Phyllis Zee, director of the Center for Circadian and Sleep Medicine at Northwestern University’s Feinberg School of Medicine, who says the hospital has been conducting presurgical screening for apnea for about 10 years. “It may be a risk factor for poor outcomes after surgery.”

The questions about snoring and exhaustion are important because, despite the efforts of medical science to spread the word, most people with apnea don’t realize they have it.

“Unfortunately, the majority of people who have sleep apnea are not diagnosed, so screening is very important,” says Dr. Ravindra Alok Gupta, an anesthesiologist who is medical director of the post-anesthesia care unit at Northwestern Memorial Hospital.

A 2017 German study found that while OSA is present in as high as 40 percent of the general German population, only 1.8 percent of hospital patients were identified as having it, which the authors cited as possibly due to “unawareness” of the patients and “under-diagnosis” among hospital staff.

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Gupta says that not only can the breathing stoppages and low blood oxygen levels associated with apnea have a profound negative impact on surgery, but there are a variety of hazards that apnea is both a cause of and a marker for.

“There are other conditions associated with sleep apnea: increased asthma, acid reflux, other lung problems,” he says. “Often, they have high blood pressure.”

An anesthesiologist needs to know this before surgery.

“Our choice of anesthesia might change based on sleep apnea,” Gupta says. “We have to think about the medication being given them.”

A 2013 article in the New England Journal of Medicine called sleep apnea an “epidemic” among surgical patients and said that while one in four adult men in the United States have apnea, for those facing surgery the percentage is even higher — eight of 10 bariatric patients, for instance, have sleep apnea.

My revelation that I had sleep apnea had immediate effects. My spine surgery was time-sensitive — taking place a week after I first went over my MRI with a surgeon. But in that brief period the hospital insisted I take a home sleep study to gauge the severity of the apnea. Instead of going to a sleep center, I brought home a kit that instructed me how to place sensor bands around my chest, a pulse oximeter on my finger and a clip under my nose to monitor breathing.

The test found I had moderate sleep apnea — perhaps a function of keeping that last 10 pounds off — information the anesthesiologist used when putting me under.

Despite the range of treatments, there is consensus in how to approach obstructive sleep apnea — start with the mask, work to do make it work and, if it doesn’t, find something that does.

Dr. Lawrence Epstein, program director of the Sleep Medicine Fellowship Program at Brigham and Women’s Hospital in Boston and a past president of the American Association of Sleep Medicine, calls CPAP “the recommended first-line therapy” but says treatment ultimately is “more about knowing all the options and trying to tailor the therapy both to what the patient has and what they would be willing to use.”

He says that while OSA is one condition, it has a multitude of causes — facial and throat configuration, muscle tone, obesity among them — so not every treatment works the same for every patient.

“We have very effective treatments, but all have some downsides,” Epstein says. “You need to match the patient correctly to the right therapy.”

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His only caveat: “Make sure it works,” he says. “We still have a ways to go” to perfect OSA treatment.

Much hope centers on that treatment soon being a pill.

“The future is neurochemical,” says Smith of Johns Hopkins. “We have a mouse model; we can treat apnea in a mouse. Probably in the next 10 years, maybe five, you’ll be able to take medication for sleep apnea because it’s a neural-chemical problem. It’s not obesity itself, not fat pressing on the airway, but fat excreting certain hormones that makes the airway collapse. The chemicals that fat secrete are the culprit.”

There have been promising human trials. Dr. Phyllis Zee was the co-lead author of a paper published two years ago in the journal SLEEP that found dronabinol, a synthetic version of a molecule found in cannabis, is “safe and effective” in treating sleep apnea.

Also, a double-blind international study of atomoxetine and oxybutynin, used in combination, found that the drugs “greatly reduced” apnea.

But for a person struggling with apnea now, the wait might be a long one.

“They’ve been predicting in 20 years we’re going to have some drug to deal with the problem,” Schwartz says. “The only problem is, it’s been a rolling 20 years. We’ll get there, I have no doubt.”

Waiting is a skill many seeking better health need to develop.

For me, it was back to longterm dieting and an appointment at Northwestern’s Sleep Center.

But as a reminder of just how many people are dealing with this condition: I was put in touch with them in July, when I had my surgery and learned my apnea had returned. They said they would schedule me for the first available appointment — which wasn’t until late October.