Stanford Today Edition: July/August, 1998 Section: Features: Can't Sleep WWW: Can't Sleep
By Chris Vaughan
It was 1972, and the pediatricians at Stanford Hospital were stumped. Raymond S., an 11-year-old boy with an array of odd symptoms, had been referred to Stanford because his doctors in the East Bay didn't know what to do. Raymond's blood pressure was so dangerously - and inexplicably - high that the 6th-grader was in danger of damage to his internal organs. Because the boy was also pathologically sleepy during the day, he was sent over to the Stanford Sleep Disorders Clinic, the first and only one of its kind in the world then.
The clinic directors - Drs. William Dement and Christian Guilleminault - diagnosed the boy's disorder as a condition they had only recently named: sleep apnea. As Raymond slept, he would literally stop breathing for anywhere between 30 and 60 seconds at a time, they found. Worse still, this would happen hundreds of times each night. When the boy stopped breathing, his brain would panic, interpreting his body's action as suffocation. The result: His blood pressure shot up, his heart pounded, and he awoke just enough to begin breathing again, but still not enough to remember the incident in the morning. Hence his excruciating daytime drowsiness. Raymond was always sleepy because he was not getting any real sleep at night.
None of the pediatricians consulted would buy the sleep clinic's diagnosis. Raymond's condition grew worse. When the boy started showing signs of heart and kidney failure, his skeptical doctors finally allowed sleep clinic physicians to cut a breathing hole in the boy's throat. The difference was fast: The boy's blood pressure dropped and his overall condition improved dramatically.
Dement would have counted this as a victory, except that the boy's primary physicians still refused to acknowledge the problem. After a few months, they wanted to close up the hole. "They still didn't understand that the hole was saving his life," Dement said. Raymond kept the breathing hole and Dement kept in touch with him for a few years. Eventually Dement lost track of him, but he expects that current practices must have allowed Raymond to have the hole closed and to use alternate therapies.
Since then Americans have learned a lot more about the importance of sleep and the dangers of sleep disorders to the nation's health. Since the discovery of Rapid Eye Movement (REM) sleep 45 years ago, Dement, 69, has played a part in nearly every major development in sleep research and has attracted star students and researchers, and the money to fund their work. Former Stanford students and fellows have spread the gospel and started their own clinics and research centers around the world. Before Congress and corporations, and on national radio and television talk shows, Dement has brought an unwavering message: "Sleep disorders are killing people, and yet they are tremendously under-diagnosed."
In a report for the House Subcommittee on Health and Environment last year, he declared that sleep disorders represent one of the nation's most serious health problems, and that the need for sleep research is virtually ignored.
The numbers are stunning. More than half of Americans have suffered from a sleep disorder at some time, according to a survey ordered last year by the National Sleep Foundation in Washington, D.C. Approximately 30 percent of adult Americans suffer from moderate to severe sleep disorders, and less than 5 percent are diagnosed and treated. More than 18 million people - 7 percent of the population - stop breathing or struggle for breath in their sleep more than five times every hour. In the worst cases, sleepers stop breathing more than 30 times each hour, often for more than a minute. Under these conditions the heart can stop beating for 10 or 15 seconds at a time, and blood oxygen can drop to about one-fifth of normal, equivalent to that of a climber at the summit of Mt. Everest. Patients with such severe apnea can get cardiovascular disease and brain damage.
ne would think that such a prevalent and dangerous disorder would receive a lot of attention and be treated aggressively. Yet Dement says that when he used a computer to scan 10 million coded patient records, he found a total of only 72 patients who were diagnosed with apnea. "I couldn't believe it," Dement says. "So I hired people to read over 11,000 written patient records." They found not one diagnosed sleep problem.
Apnea is only one of many sleep problems that are unrecognized or ignored. Sleep specialists estimate that physicians detect only about 2 percent of all sleep disorders, and most people have basic misconceptions about the mechanics of their own sleep. Put it in another context and the danger is clear. "It's almost as if no one had ever heard of diabetes," Dement says. "What if we didn't know that the blindness, nerve damage and other health problems in one part of the population were due to one treatable disease?"
Hundreds of sleep-disorder sufferers have testified in Congress for the National Commission on Sleep Disorders Research about the shambles made of their lives from apnea, narcolepsy (sudden attacks of sleep and paralysis), insomnia and restless legs syndrome - an infuriatingly frustrating syndrome in which people can't fall asleep because they must constantly stretch their legs. Statistics from a study by the government's National Transportation Safety Board show that sleep deprivation contributes to approximately 72,000 accidents on the roadways each year. The total cost of drowsy driving amounts to $12.4 million a year. The study also established that sleep deprivation was a major cause of the grounding of the Exxon Valdez oil tanker in Alaska.
Even without a diagnosis, many people are sleep deprived and never know it. Over millions of years, our bodies have evolved to awaken and to sleep with the rise and fall of the sun. But the invention of electric lights has given us an artificial sun and provided a basis for our busy 24-hour society. As a result, people now get about 20 percent less sleep than they did a century ago. No wonder we're sleepy. A study by the National Sleep Foundation reveals that 64 percent of people in the United States sleep fewer than the recommended 8 hours a night, while 32 percent sleep fewer than 6 hours a night. Not surprisingly, sleep deprivation is extremely high among the nation's college students.
Society has been slow to recognize sleep disorders because of major misconceptions about what sleep exactly is. People traditionally considered sleep a time when the body and brain simply turned off. Physicians thought that nothing happened in sleep; that sleep could not be a source of health problems.
Overturning such scientific and popular misconceptions about sleep has been a major activity for Dement, his colleagues and students since the start of the era of modern sleep research in 1953. In that year, University of Chicago physiologist Nathaniel Kleitman and graduate student Eugene Aserinsky discovered that the body and brain do not shut down during sleep. Instead, they experience periods of rapid eye movement. Dement joined Kleitman's lab shortly after and helped demonstrate that intense brain activity and dreaming accompanied these REM periods in the sleeper. After completing his medical degree, Dement carried on his own research at the Mount Sinai Medical Center in New York where he took the next step, demonstrating that everyone has REM sleep.
By the time Dement moved to Stanford in 1962, he was working on a seemingly rare sort of epilepsy - called narcolepsy - that caused people to feel week in the knees, collapse or fall instantly asleep when they laughed or got otherwise excited. These narcoleptic patients could even find themselves dreaming while awake, unable to tell which images were real and which were dreams. Dement had come across only five such patients in New York. But when he placed an advertisement in the San Francisco Chronicle describing narcolepsy's symptoms and asking for people to call if they fit that description, he found 50 new patients.
In 1965, sleep apnea had been described in a few obese patients by French researchers, but the discovery had been practically ignored because no one realized that the disorder could be so severe, or that slender people could suffer from it. The disorder was called Pickwickian syndrome after "Joe, the fat boy," a lad in Dickens' The Pickwick Papers who could fall asleep standing up.
Apnea occurs when the muscles relax during sleep, narrowing the throat where the back of the tongue is anchored. As air is pulled into the lungs, the suction collapses the throat and halts breathing. "When straws were made of paper, I used to say it was like trying to suck a milkshake through a wet straw," Dement says, laughing about his antiquated illustration. "Students now have grown up with plastic straws, and they don't know what I'm talking about."
If the air passage is almost closed off, breathing results in loud snoring as the throat tissue vibrates. Loud snoring (i.e., easily heard through a wall or closed door) is a danger sign that someone has apnea or soon might get it. Apnea is especially debilitating because it deprives the sleeper of the most important phases of sleep - REM sleep and deep non-REM sleep - when the muscles are most relaxed.
Although tracheostomy (a hole in the throat) used to be the only treatment for apnea, there are now a number of treatments, including surgery to trim throat tissue, and machines that provide positive pressure in the airway to keep it open during sleep. A new technique has just received approval from the Food and Drug Administration: zapping the throat with a carefully calibrated dose of microwaves to painlessly shrink the tissue and open the airway.
Research at the Stanford Sleep Center eventually led to the isolation of a gene for narcolepsy in dogs that experts expect will help in the search for a human gene. In 1972, sleep experts realized that when people complained about being sleepy during the day, it was their sleep that should be examined. The Stanford Sleep Clinic was opened to diagnose and treat sleep problems.
Dement's terminology is probably his most famous contribution to public awareness of sleep disorders. "Gentlemen," he declared before a House committee in 1985, "the national sleep debt is more important than the national monetary debt!" He estimates that sleep disorders cost the economy $100 billion a year in lost productivity.
n the late 1970s, Dement and Stanford researcher Mary Carskadon (now a professor at Brown University) discovered a way to quantify sleepiness. They developed the multiple sleep latency test, still the standard in the field, which proved that sleepiness increased as sleep was curtailed. If they were surprised to find that the body kept track of each hour of sleep missed, they were astonished to realize that the only way to pay back this "sleep debt" and alleviate daytime sleepiness was to get exactly that many hours of extra sleep on subsequent nights.
In addition, we are tremendously bad judges of our own sleep debt's size. A study by Thomas Roth, director of the Henry Ford Sleep Disorders Center at the Henry Ford Hospital in Detroit, revealed that even among average people who are pathologically drowsy, as sleepy as those with narcolepsy, most do not think they have a problem with daytime sleepiness.
Despite advances in the field, Dement worries over the inability of general practitioners to recognize and diagnose sleep problems - even among those close to home. Dement tells of a time when he became so frustrated by the lack of referrals from Stanford doctors that he walked into a waiting room at the hospital and offered people sitting there the chance to get a free sleep test worth $1,000. Of the five who accepted, three turned out to have apnea.
Although surveys show that the public is more aware of sleep disorders, they are still tremendously under-diagnosed. Dement is currently studying how primary care doctors recognize and treat sleep disorders in small towns. He still gets shocked by the results: Practically zero cases of apnea were diagnosed by the physicians, although further investigation has shown that one in five patients had apnea. "I had one doctor who had 200 patients with apnea, and he didn't even know it," says Dement with exasperation. "There are 200,000 more doctors like him out there."
The most recent data are even more shocking: 80 percent of those diagnosed with apnea in the survey town of Moscow, Idaho, have a very severe form that usually leads to death from heart attack or stroke within 10 years. "I almost couldn't believe the data myself, but it is solid," Dement says.
"I don't like medical malpractice suits," Dement says with anger, "but some day, some smart lawyer is going to realize all these people are dying because of an obvious, but missed, diagnosis, and is going to make a fortune in wrongful death cases. The signs are so obvious, a 6-year-old could make a diagnosis." ST
Chris Vaughan is a freelance writer living in Palo Alto. He is currently working on a book on sleep disorders.
NOISY IS THE NIGHT
Hi, my name is Lisa, and I am married to an apneac.
Don't think I'm unhappy. Victor is a great guy - a Stanford man, smart, funny, kind, a wonderful husband and friend . . . and he did warn me. But for the first six months of our marriage, we have been taking life "one night at a time."
Every evening, we settle in as newlyweds for our sweet dreams. But then the snoring starts. In order to sleep, I create Walter Mitty-like scenarios. My husband is Paul Bunyan - with a power saw - and he's turning already-felled trees into boards for Habitat for Humanity, or my husband is a dentist with an intermittent drill helping the mouths of needy children. I fall asleep with a smile on my face.
Then, his snoring stops with an eerie, breath-defying silence, and I bolt awake in emergency mode with adrenaline pumping. I watch helplessly as he begins his nightly ritual of raspy gasping and groping for air with his whole chest heaving. Just when I'm ready to shake him to make him breathe, he inhales a huge gulp of air and goes back to snoring. I lie there awake, waiting for the next frightening silence.
Apneacs usually don't wake up enough to be cognizant of their body's betrayal, but those sleeping next to them often do. And both have been snatched away from deep rest and finished dreams. I took Dr. Dement's "Sleep and Dreams" class years ago and remember the dangers of sleep deprivation and REM robbery. In the battle against exhaustion, naps have become acts of survival for us, not lazy indulgences or luxuriant escapes.
Fortunately, my apneac is not in denial. He is tired of being tired, and says he is "willing to do anything to be better in bed." Determined to move beyond apnea, Victor endured laser surgery in the spring of 1997 to reduce soft tissue in his palate that may have been obstructing his night breathing. He then underwent three separate rounds with an experimental procedure called somnoplasty. But in March 1998, another sleep study revealed quantitatively that Victor's apnea had gotten worse. One hundred eighty-four times during the night, his breathing was obstructed enough to disrupt his sleep and threaten the supply of oxygen to his brain. And his was only a "moderate" case. My heart goes out to the apneac and spouse of a "serious" case.
A series of doctors in New York recommended major surgery to further reduce his soft palate, but their predictions for success ranged from a high of 80 percent to a low of 50 percent. How can you decide what to do when your brain is sleep impaired? I wonder if "no rest for the weary" was coined by an apneac. I suggested that Victor try getting some uninterrupted dream time with a CPAP machine. It uses continuous positive airway pressure (CPAP) to force air into your lungs through a face mask while you sleep. This was not the paraphernalia we had imagined during the honeymoon phase of our lives. But sometimes the route to "good dreams" takes a surprising turn.
For me, the CPAP machine's loud hum was a lullaby compared to the usual snoring and gulping, but for my spouse, wearing the mask "is like standing up in a convertible going 80 miles an hour with your mouth open." Exhausted from the apnea, he was able to fall asleep under the air assault, and it worked - for a while. The continuing blast hurt his sinuses and he would rip the mask off in his sleep. Clearly this was not a long-term solution for us.
So, at last, in our quest for deep sleep, we came to Stanford's renowned pioneer in sleep surgery, Dr. Nelson Powell. He spent two hours with us, conducted tests, asked and answered a wide range of questions. We learned that we are part of an unrecognized epidemic. Powell thinks that sleep disorders may be the cause of depression, impotence and accidents for tens of thousands of people. And then there are the spouses. He said motor response tests actually found the spouse worse off than the apneac. Friends of mine started sharing their nocturnal woes (years of spouses sleeping in separate rooms) and diurnal daze (nap fantasies and chronic exhaustion).
We're ready to end this nightmare. My husband is scheduled for surgery at Stanford: Moving his tongue forward to enlarge his airway may be the solution. He should be out of the hospital in two days. Then, when we settle in for sweet dreams - we may finally be able to finish them!
We look at it this way: We spend one-third of our lives (eight of every 24 hours) sleeping . . . or trying to. We hope to be married at least 45 years. That means 15 years of our future will be spent in bed together! We don't want to have to wait until we die to rest in peace.
- Lisa Sonne
LET SLEEPING DOGS LIE
Why do we sleep? Believe it or not, the question remains an enigma. Part of the answer, though, may rest with a brood of Dobermans at Stanford University. These dogs are generally energetic and friendly, but if they get excited about special food or a new toy they flop to the ground, completely paralyzed. They suffer from narcolepsy. Their narcoleptic attacks last just minutes, and then they rise as if nothing had happened.
"A normal dog can eat a dish of food in a few minutes, but it might take a narcoleptic dog an hour because he keeps collaps- ing," says researcher Emmanuel Mignot. The dogs are not hurt or suffering, merely afflicted by cataplexy, a paralysis or muscle weakness that is part of the narcolepsy syndrome. The dogs can fall asleep briefly during this cataplectic attack, or they can remain conscious but unable to move.
Narcolepsy is the only sleeping disorder known to arise from a glitch in a primary sleep mechanism. By looking at the disorder in dogs, scientists hope to discover how the brain puts itself to sleep and what sleep does for the body in humans with narcolepsy. Recently, Mignot isolated the gene for narcolepsy - canarc-1 - in these dogs and found that it is a variant of a normal immunoglobin gene. Immunoglobins are proteins that the immune system creates to scavenge invading microbes. At this point, researchers don't know why an immune gene causes sleep attacks. Mignot and colleagues speculate that narcolepsy may be an autoimmune disorder, like lupus or multiple sclerosis. But narcoleptic dogs and people lack other signs that usually accompany autoimmune disorders.
A more tantalizing possibility is that normal sleep is somehow related to the operation of the immune system.
Mignot and his colleagues are now using their work with the dogs and other research to search for a human gene for narcolepsy. Mignot feels he will have it soon, in six months to two years, and hopes that the discovery will clarify what causes narcolepsy and suggest a possible cure.