Tuesday, December 10, 2019

Breathless in the night: The struggle to treat sleep apnea

Metropolitan Museum of Art

     This is a melancholy day for me. Five and a half years ago, the Wellcome Trust, the largest medical charity in Great Britain, started Mosaic Science, a web site devoted to health and medical journalism. I heard about after one of their editors asked a pal at The Economist if she wanted to write about people with trouble swallowing. She didn't, but passed the assignment to me. I wasn't interested either, but had a story—Why are people so afraid of the disfigured?—that I had long wanted to write. Only nobody wanted to print it.  I passed the idea by Mosaic's editors, they embraced it, and Face Fear become the first of five articles I wrote for them.
     This is the last, my last article for Mosaic Science and the last they are ever publishing. Wellcome is shutting it down after today. If journalism is going to be saved by non-profits, then a $38 billion entity being unable to manage a blog posting two stories a month—kinda puts EGD into perspective, doesn't it?—has to be worrisome .

     If you're interested in Wellcome's explanation, you'll find it here. Boiled down, it's because a) Mosaic is expensive to run and b) commissioning stories produced messages that didn't perfectly mesh with their corporate goals. 
     I can't express how much I loved being associated with Mosaic. The articles were a ton of work—taking six to nine months, part-time—I've been beavering away on the one below since March.  A writer my age and position worries about phoning it in, or should, and nothing about these pieces was phoned in. They required me to talk to people who were terribly burned, to sit down with a Philadelphia plastic surgeon and go over the video of his repairing the muscles in a boy's face, to fly to Japan for the birthday party of a teddy bear.
     One of the wonders of Mosaic is that they publish under a Creative Commons license. Meaning that anybody is free to do anything with their stories. You could print them on a t-shirt and sell them. My pieces have appeared in publications from The Guardian to the Saturday Evening Post, featured on CNN, the BBC and one, on falling, was anthologized in a book.
     It also allows me to both link to the finished product—here—and post my own draft below, which is 30 percent longer (and not, I should add, copy edited by their fine editors). I'll leave it to you which you read, but will note that the vacuum cleaner's unexpected use in medical treatment, which I thought the crowning detail of the piece, got edited out —for completely valid reasons, because the thing is too long and the 1936 Lancet article I reference is certainly off point, albeit delightful. (If Mosaic were still around, I'd pitch to them a story on the role of household appliances in medicine. Alas, they are not).
     I do like a good honking long tale. And maybe you do too. So settle back and give yourself time to read this. You might as well savor it, because there won't be another. In parting, I want to thank my editors at Mosaic, Chrissie Giles and Rob Reddick, plus all the others, fact checkers and illustrators—they were a web site that used both. I don't expect to find their equal again.

Joyce Baronio Wearing Sleep Mask, by Walker Evans 
Metropolitan Museum of Art
     I thought I was dying.
     During the day, I was so tired my knees would buckle. Driving the car, my head would dip then I would catch myself. My face was lined with exhaustion. At night, I would sleep fitfully, legs churning, then snap awake with a start, gasping for breath, heart racing.
     My doctor was puzzled. He ordered blood tests, urine tests, an electrocardiogram—maybe, he thought, the trouble was heart disease; those nighttime palpitations....
     No, my heart was fine. My blood was fine.
     He ordered a colonoscopy—I was 47 years old, almost time for my first one anyway. So I forced down the four liters of Nulytely, to wash out my intestines so a gastroenterologist could take a good look inside.
     My colon was clean, the doctor administering the colonoscopy told me when I regained consciousness. No cancer. Not even any worrisome polyps.
     However. There was one thing.
     "While you under," he 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 people hadn't. But we would.


     For most of human history, sleep was little considered by medicine. A realm of dreams, where the body repaired itself in some ineffable way. Since the middle of the 20th century, however, sleep has become increasingly studied, and we now understand it as a complicated physical condition, separate and very different from waking reality.
     Sleep is marked by dynamic changes throughout the body. Breathing regulates. Blood pressure and body temperature fall. Plus a "very significant loss of tone of most major muscle groups in the body," according to Wallace Mendelson, the former director of the University of Chicago's Sleep Research Laboratory. While nighttime slackening of muscles is not particularly significant when it comes to, say, the legs, when the muscles of the throat 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, or "breathless."
      With OSA, the sleeper's supply of air is continually interrupted, causing oxygen levels in the blood to plummet, then the sleeper stirs, gasping, trying to breathe. This can happen hundreds of times a night, and the ill effects are many and severe.
     Thus apnea puts strain on the heart, racing to move the less effective de-oxygenated blood around the oxygen-starved tissues of the body, increasing 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, OSA 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 OSA are 2.5 times as likely to get in car accidents as those without—as well as absenteeism. People with sleep apnea are also fired from their jobs far more frequently than those without.
     All told, those with untreated sleep apnea, according to a study in the journal Sleep, are three times as likely to die during any given period as those without.
     As with smoking during the first decades after it was discovered to be lethal, there is a disconnect between the harms that OCS causes and public perception of it as a threat. Even sleep researchers were slow to acknowledge the problem. In 1972, when the Association for the Psychological Study of Sleep organized an international workshop on “nomenclature of the sleep disorders,” none of the diagnostic classification schemes submitted by participants even mentioned sleep apnea as an area of interest.


     Sleep apnea was first described in medical literature in 1965 by a pair of European teams working independently: a trio of French researchers led by neurologist Henri Gastaut, who specialized in studying epilepsy, and German researchers Richard Jung and Wolfgang Kuhlo, who published "Neurophysiological Studies of Abnormal Night Sleep and the Pickwickian Syndrome."
     "The Pickwickian Syndrome" is the literary name given in 1956 to breathing troubles of the severely obese, and the lack of oxygen in the blood caused by those difficulties. The name is a reference to the servant Joe in Charles Dickens' 1836 novel "The Pickwick Papers." Joe is a large, "dumpling-cheeked" boy who throughout the novel is either asleep and snoring or lethargically going about his duties in a narcoleptic shamble, which might find him sliding off the box of a carriage and to the ground.
     "The night sleep of Pickwickian patients is interrupted by long apneic periods of 20-40 seconds duration, terminated by 1-3 irregular snoring breaths" the authors wrote.
     Today, nearly a billion of the world's 9 billion people suffer from mild to severe sleep apnea, according to the first global study of the ailment, published in The Lancet in August, 2019. The article, decrying "the scarcity of published data on the global prevalence of obstructive sleep apnea," notes that the country with the most severe OSA is China. Researchers there cite Asian facial configuration as a contributing factor.
     "The Chinese community should have a higher incidence of OSA than Caucasians due to upper respiratory structure—narrow cranial base and flat mid-face," wrote Dr. Lai Chun-Ting, a researcher at Taipei Medical University in Taiwan, where unpublished data suggests that more than 50 percent of Taiwanese men over the age of 60 display some degree of apnea.
     Sleep apnea was first diagnosed in mainland China in 1981 at Peking Union Medical College Hospital, and researchers there mark that moment as the beginning of recognition that sleep is a distinct medical realm requiring specialized study and expertise.
     "The practice of modern sleep medicine in China starts from the recognition of sleep apnea," wrote Dr. Han Fang, president of China's Sleep Research Society.


     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 both exhaustion and the suggestion from the doctor overseeing my colonoscopy, with other possibilities ruled out, in early 2009 I made an appointment at something called North Shore Sleep Medicine.
     My doctor had suggested the place, but I was dubious. It didn't feel right. The facility was not in a hospital, or even a medical building, but a brick house that had been converted into a clinic on a suburban residential street in Skokie, a working class community north of Chicago.
     I suspected the whole thing was some kind of elaborate scam.
     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. That was a good sign. She peered down my throat then suggested that I take a polysomnogram—a sleep study, where 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. That helped. 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 in February at 9 p.m., an odd time for a medical appointment. It was dark outside. I rang a doorbell. A technician showed me into a small bedroom containing a square double bed and an armoire. Behind the bed, a horizontal 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, 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 armoire mirror. There usually isn't a one specific moment in a man's life where 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 taking place 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, about 10 p.m. clicked off the light and, miraculously, soon fell asleep.
     At midnight, I woke up, confused, in a strange bedroom, a young woman hovering above me in the dark—a wire had pulled loose as I tossed. She reattached it, then was gone and I went back to sleep.
     I woke up again, 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 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 that my apnea was "severe" and Dr. Shives would give me the details later. I had planned to take myself out to a celebratory breakfast after my sleep test, but instead I just went home. I wasn't hungry; I was scared.


     A few weeks after my sleep study, I was back the North Shore Sleep Center in the daytime. Shives sat me down in front of a screen full of multi-colored 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, particularly in grainy black and white. like seeing a crime scene image of yourself, dead.
     Speaking of death, I had stopped breathing, Shives told me, for as long as 112 seconds—almost 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 at times dipped to 69 percent.
     How bad is that? The World Health Organization, in a guide to medical personnel, suggests they immediately check whether a patient's airway is blocked, a lung has collapsed or their heart has stopped beating, should oxygenation fall to 94 percent or below.
     My options were few. I could, she said, 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 into a small side room, where one wall was lined with shelves of Styrofoam heads, each wearing a clear, soft blue-tinted plastic mask, held on by a series of elastic straps, around the temples, some 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 somewhat tinctured with horror, like heads stuck on pikes. Screaming and fleeing the office didn't seem the path of the hero, however. I tried on a mask. It fit.


     In the first few decade and a half after OSA was identified, there was only one treatment option. You could have a tracheotomy—a surgical procedure where a tracheostomy, or hole, is cut low in your throat, to allow air directly into the lungs, bypassing your collapsing upper airway. Jung and Kuhlo performed the first tracheotomy to treat OSA in 1969. It offered reliable relief, but had complications of its own, and doctors only considered it in the fact of patients in severe and immediate distress.
     "In the early days, doctors didn't know much," said Schwartz. "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."
     Patients were understandably wary of the procedure, which today is "a surgical option of last resort" performed only in cases of extreme medical urgency.
     "I was always a very loud, aggressive snorer, waking up in the middle of the night, gasping," said Angela Cackler, of Hot Springs, Arkansas, who was diagnosed with sleep apnea in 2008, though she believes she had OSA since she "was tiny."
By 2012 her heart was failing.
     "I went into the emergency room because I was really tired, not feeling well," she said. "I found out it was heart failure. The next morning, they said, 'We are going to do a tracheotomy.'"
     And how has she adjusted to the tracheostomy after seven years?
     "Oh my gosh, I'm still trying to adjust to it," she said. "It's a battle to deal with. It is not fun. There is a lot of cleaning. It's nasty. It's work. You don't breathe normally. Your natural humidifier is completely gone. You have to supplement that. You're susceptible to infections."
     That said, the procedure did eliminate her OSA.
     "It's definitely a huge cure for it," she said, adding that the biggest drawback to a tracheostomy is it has kept her from swimming, a recreation she once enjoyed. "I don't snore and I can breathe and sleep better. I hate the care of it and the looks I get."
Would she have it done again?
     "If I had to do it again, yeah, absolutely," she said. "It has saved me."
Though they work in treating OSA, 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. Experimental gases were used, delivered to the dogs through a tracheostomy. Returning to Australia, Sullivan designed a mask that could fit around the snout of dogs to deliver gas.
     A human patient scheduled for a tracheotomy was "eager to know if there was anything else that might work," in Sullivan's words, inspired him to try to modify the dog mask for use by people.
     Sullivan did not invent the idea of blowing air into patients' lungs. That goes back at least to 1936, when London physician P.E. Poulton wrote a report 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 a reflection of the Great Depression then in full cry, but Poulton, incredibly to today's sensibilities, does not mandate using a new vacuum cleaner to treat patients. Instead he suggests that, "when the household vacuum is employed the machine should be run for some minutes first of all to get rid of dust.")
     Sullivan took plaster casts of patients' faces, creating a Fiberglas mask attached to a hose. The blower—shades of P.E. Poulton—was salvaged from a vacuum cleaner, with a head harness crafted from the inside of a bicycle helmet. In a 1981 paper describing the process, Sullivan used the mask fitting over the nostrils of five patients and found, "continuous positive airway pressure completely prevented the upper airway occlusion in each of the five patients. The upper airway occlusion could be turned off and on simply by increasing or reducing the level of positive airway pressure."
     Sullivan patented his device, but it took almost a decade to bring CPAP to apnea patients outside a lab. First he partnered with Baxter Healthcare, which conducted trials for three years, then abandoned the effort. But one Baxter employee, Dr. Peter Farrell, quit his job and formed a new company, ResMed, to market the CPAP device. 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 operating in 100 countries.
     Now that they could offer a viable treatment, doctors began vigorously spreading the alarm about OSA. In an editorial in the New England Journal of Medicine in 1993, "Sleep Apnea—A Major Public Health Problem," Phillipson wrote it was "time for the nation to wake up to the staggering impact of sleep disturbances on the health and welfare of our society, an impact that rivals that of smoking," citing a University of Wisconsin study that found nearly a quarter of adult men have OSA, and that "undiagnosed sleep apnea in adults represents a major public health burden" with further research "urgently needed' to understand the role apnea plays in heart and vascular disease."
     Millions of patients find relief with the CPAP machines, though success often requires perseverance.
     "There was an adjustment period," said 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 became used to the mask, his condition improved dramatically.
     "The benefits of it are I get a more restful sleep," said Frisch. "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."
     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—doctors made an unwelcome discovery: Their primary treatment often didn't work. Not much of the time, not 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," recalls Schwartz. "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 out 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 receiving them.
Half the patients found the mask uncomfortable, claustrophobic, and that was only within the first month.
     I certainly did.
     Though not right away. I was assigned a Puritan Sandman, rented at $175 a month with an additional $40 fee for the humidifying add-on. The name was no doubt intended to evoke the bouncy 1940s hit, "Mr. Sandman," but for me it seemed a machine assembled by that weird late 1930s comic book hero, "The Sandman," in his business suit, fedora and gas mask. With a water tank at the back—to moisten the air—my new CPAP seemed like a device The Sandman would use to restore his crime-fighting powers at night through some magic serum.
     The CPAP did make me feel better the first night I wore it—again under observation at the Sleep Center. I woke 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. That first "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. 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.
     Then 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. I didn't realize how lucky I was: spouses of other mask users ridicule them ("Elephant nose!" one Polish user recalled her husband calling her, "Alien!" before he went off to sleep in the guest room).
Despite their drawbacks, the masks have become commonplace.
     "A lot of people are familiar with CPAP, can use the word 'CPAP' and don't cringe," said Schwartz. "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."
For half the wearers. But I was part of the 50 percent who couldn't. Most nights at some point I would wake up and rip the mask off, casting it aside. 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 would fiddle with the pressure settings, or encourage me to try other masks. I went back several times, and began to feel like a regular. 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. 

    I am not Asian, but I was heavy: while it is possible to be thin and have OSA, obesity multiplies the probability. I'm 5'9 and weighed 150 pounds when I graduated college. In 2009, I weighed 210. Some 40 percent of the world's population is overweight, the obesity rate tripling since the 1970s, as Western eating habits reach every corner of the globe. 
      This has spread apnea all over the planet, particularly in affluent countries. "In Saudi Arabia, three of ten Saudi middle-aged men and four of ten Saudi middle-aged women are at high risk for OSA," Ahmad Bahammam wrote in the Annals of Saudi Medicine in 2011, noting "the pandemic of obesity has increased the risk of OSA." More than half the patients admitted for coronary care have it. A 2016 study using self-administered tests in Argentina found 38 percent of men there suffered from mild to severe apnea.


      "In terms of therapeutics, CPAP really was such a huge success in the laboratory," said Schwartz. "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 have 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," said Dr. David Turok, a general 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.
     Like CPAP, the oral appliance is also an imperfect solution.
     "My three warnings to all my patients are this," said Turok. "One, because your jaw is held in a forward position, your muscles are being strained. That can be uncomfortable. Two, with this muscular distraction, your jaw might get used to that position as your anatomy adapts. You bite might change, and your jaw wants to stay in its forward, protruded position. And three, using the teeth as anchors, holding your jaw in a forward position, pressure on your teeth can move them a little."
     In his near-decade of creating OSA appliances, the majority of Turok's patients have success with an oral appliance.
     "Across the board it is very well tolerated and used," he said. "But these are mild-to-moderate cases. Someone with severe sleep apnea, CPAP is preferred. I never say you have a choice. You've got to try CPAP first."
     He said that the surest way to address apnea, for patients who can't adjust to either the CPAP or oral appliances, is orthognathic, or jaw advancement, surgery, a better procedure than widening the soft tissue of the throat.
     "Recovery is easier because it is bone healing instead of tissue healing," Turok said.
     Treatments are moot, however, if you don't know you have OSA. Turok observed 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 said. "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. I think dentists should be a huge part of the screening process."
     Even with CPAP and oral appliances as treatments, doctors dragged their feet regarding diagnosis and treatment.
     "The diagnosis and treatment of sleep disorders in primary care medicine today is essentially zero," Stanford's Dement said in a 1998 report to Congress from the National Commission on Sleep Disorders Research. "The practice of medicine ends when the patient falls asleep."
     The latest strategy against OSA is, in essence, an electrical version of the oral appliance: hypoglossal nerve stimulation, where a small electrical charge is used to contract muscles and draw the tongue back during sleep.
     "We started the original work about 20 years ago," said Dr. Philip Smith, a professor of medicine at Johns Hopkins Medical School and an expert in pulmonary disease and sleep apnea. "A very small pacemaker—the same as a cardiac pacemaker, a wire loops up goes around nerve hypoglossal nerve, with a small cuff electrode."
     The hypoglossal, or 12th cranial, nerve controls the tongue. The pacemaker device is implanted in soft tissues just below the collarbone, the electrical lead is tunneled under the skin, and just below the jaw a cup is placed around the hypoglossal nerve. The patient using the device activates it before sleep by pressing a button on a remote control.
     "It's actually quite well tolerated," said Schwartz. "If you are awake you feel your tongue is stiffening up or moving a little bit forward. In general patients sleep through it really quite well."
     A 2014 study in the New England Journal of Medicine found that "upper-airway stimulation led to significant improvements in objective and subjective measurements of the severity of obstructive sleep apnea." That study was funded by Inspire, the only FDA-approved HNS device, available in the United States and certain European countries. The device was approved by the FDA in 2014, and makers of Inspire say that 6,000 people worldwide have the device implanted in their upper chests.


     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 addictive substances like alcohol, or sugar.
     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 donuts. 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 calendar year to lose the 30 pounds. And I did it, going from 208 pounds on Jan. 1, 2010, to 178 pounds on 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.
     The apnea, in a rare twist, was now a positive, an inspiration to dieting. And losing the weight did the trick. No more mask.
     “What else helped?” I wrote. “I had a debilitating condition – sleep apnea – and a doctor said, if I lost 30 pounds, it might go away.”
     I’m surprised I admitted in print that I had OSA. It was embarrassing. I’m not sure why. It isn’t as if apnea were an ailment classically suffused with shame. It wasn't like having gonorrhea. I suppose OSA just seemed a feeble aging fat man's complaint, echoes of The Pickwick Papers' Joe. I'd see the elastic marks on the red flabby faces of my fellow commuters at the train station in the morning, and I'd pity them for it, and hated the thought of casting myself among them.


   "Weight loss is curative," said Smith. "The problem is, they can't do it."
     Which underscores the enormous difficulty of dieting: even being unable to breath 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.
     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. And with it, the apnea came back. Not that I realized it until the summer of 2019, when I underwent spine surgery: a C3-7 laminoplasty. The pre-surgery questionnaire at Northwestern Memorial Hospital in Chicago asked if I sometimes snored, if I was often tired, if I had ever been diagnosed with sleep apnea.
     Yes, yes and yes.
     "It's important to screen people for sleep apnea because it could be a risk when having surgery," said Dr. Phyllis Zee, director for the Center for Circadian and Sleep Medicine at Northwestern University's Feinberg School of Medicine, who said the hospital has been conducting pre-surgical 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," said
Ravindra Alok Gupta, MD, anesthesiologist and 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, that only 1.8 percent of hospital patients were identified as having it, which the authors cite as possibly due "unawareness" of the patients and "under-diagnosis" among hospital staff, whose consideration of the possibility of apnea the researchers found "low."
     Gupta pointed out that not only can the breathing stoppages and low blood oxygen levels associated with apnea have 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 said. "Often they have high blood pressure."
     An anesthesiologist needs to know this beforehand.
     "Our choice of anesthesia might change based on sleep apnea," said Gupta. They might choose a peripheral nerve block over general anesthesia, for instance. "We have to think about the medication being given them. Several medications can cause airways to collapse, or when you start adding multiple medications, those effects build up and layer one on another. "
     Afterward "we have to watch them very carefully, monitoring them for a longer period of time."
     A study in 2007 that found 8 percent of post-surgical patients who had complications severe enough to send them to the Intensive Care Unit could be directly attributed to apnea.
     A 2013 article in the New England Journal of Medicine called sleep apnea an "epidemic" among surgical patients and noted while one in four adult men in the United States have apnea, for those facing surgery the percentage is even greater—8 in 10 bariatric patients, for instance, have sleep apnea, resulting in a range of risks.
     "Patients with sleep apnea undergoing orthopedic or general surgery appeared to be at increased risk for pulmonary complications and need for intensive care services, which significantly increase health care costs," the authors noted.
     My revealing 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. There was no EEG, and one drawback of these take-home tests is the units never know if you are actually asleep or not while the readings are being made.
     Still, the lowering threshhold of the cost and inconvenience of diagnosis offers hope that more people will discover they have apnea—the cost and time needed to have an in-lab polysomonogram is thought to be one reason up to 80 percent of men who have moderate-to-severe sleep apnea are never diagnosed.
     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 possibly range of varying treatments, there is consensus in how to approach obstructive sleep apnea—start with the mask, try to do make it work, and if it doesn't, find something that does.
     Dr. Lawrence Epstein, program director at the Sleep Medicine Fellowship Program at Brigham and Women's Hospital in Boston and 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 pointed out that while OSA is one condition, it is prompted by a multitude of causes—facial and throat configuration, muscle tone, obesity—and so not every treatment works the same for every patient..
     "We have very effective treatments, but all have some downsides. You should try to match the person with the thing most likely to work. You need to match the patient correctly to the right therapy."
     There really is only one caveat:
     "Make sure it works." he said, noting that "we still have a ways to go" when it comes to perfecting OSA treatment.
     Much hope is centering on that treatment soon being a pill.
      "The future is neurochemical," said Dr. Philip L. 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 are also promising human trials. Dr. Phyllis Zee was 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.
     “The CPAP device targets the physical problem but not the cause,” said Zee, whose study was funded by the National Institutes of Health. “The drug targets the brain and nerves that regulate the upper airway muscles. It alters the neurotransmitters from the brain that communicate with the muscles. Better understanding of this will help us develop more effective and personalized treatments for sleep apnea.”
     There are other hopeful signs. A double-blind international study of atomoxetine and oxybutynin, used in combination, found the drugs "greatly reduced" apnea, cutting the apnea hypoxic index from a medium of 28 to 7.5.
     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," said Schwartz. "The only problem is, it's been a rolling 20 years. We'll get there, I have no doubt. There are a couple of promising pharmacological approaches that may be on the horizon."
     Waiting is a skill many seeking better health need to develop. For me, it was back to long-term dieting and an appointment at Northwestern Sleep's 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 the apnea had returned. They said they would schedule me for the first available appointment: in late October.

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  1. I was diagnosed with this after a sleep study when I complained of constant fatigue to my GP like six years ago. He's a big believer that undiagnosed sleep issues are a huge medical crisis for men so I'm glad I had him. I adjusted to the full mask immediately and I'm pretty sure I had like 20 years of terrible, incomplete sleep until I got this thing. My wife loves it as it nuked a terrible snoring issue that was messing with her sleep, too.

    Nice article, too; I had no idea the diagnosis and treatment were so relatively "new". And I'm slightly encouraged to know that there's the possibility of non-device treatments down the road.

    I'm also saddened to hear about Mosaic being shut down, but it does reinforce the point that everybody looking to generous billionaires to be the saviors of good journalism are absolutely kidding themselves :(

  2. The Wellcome foundation is, has, and will do a lot of good. They are doing different things over time and change what approaches they take. Perhaps you can write an article about the good they do, how the money came to be, etc.

  3. Great article and such a truly pervasive, personal issue among us.

  4. Most informative. A relative had a mild form of it and now they test it in the house-you apply your own wires to the machine then ship it back, cost is paid for. It's more convenient and saves the insurance co. $. They didn't need the mask but was told some orthodontic mouthpiece might help.

  5. Read your article on sleep apnea, I have similar experiences, after getting my CPAP machine, I became a motorcycle instructor, really heavy exercise particularly for a 50 year old. As a consequence shed about 30 lbs in weight. I went back for my yearly check up and was told that I needed to be re-calibrated. I requested to be fully retested, they basically said "No one gets better from sleep apnea". I mentioned extreme exercise and 20 lbs weight loss.

    I was retested and found to be ok.

    Needless to say I lapsed back into my old ways and it returned. Got a new CPAP machine, hated it.

    Then tried sleeping on my front, guess what no apnea. My apnea the second time around was less severe.

    I found a simple test for my apnea was to test my short term memory, with apnea I have very poor recall.

  6. The NYT has an article today on two men that say they beat apnea:

  7. It is a miserable condition. CPAP had me swallowing air so I woke up every morning with a distended and horribly painful abdomen. But I kept using it, until the 2008 economic collapse had me losing my job and medical insurance and i received a $700 bill for the machine rental.
    Good luck Neil. Hopefully 10 LBS will get you back to restful sleep.

  8. I've often wondered how reliable sleep studies may be. I can't think of more abnormal sleeping situation. Trying to sleep in a strange bed, in a strange room, hooked up to a bunch of wires all over you, and realizing someone is watching and recording you can be unsettling. Plus, what happens when you have to get up at least once in the middle of the night to go to the bathroom?


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