A Sleep Pioneer’s Labor of Love
Finding a great sleep physician, and saving my life.
Posted Sep 09, 2017
It is my great pleasure to acknowledge and appreciate a trailblazer in the sleep health field, Neil B. Kavey, M.D. He founded Columbia University Medical Center/New York Presbyterian Hospital’s (CUMC/NYPH) Sleep Disorders Center in 1975 and served as its director for over 35 years. He also happens to have been my sleep doctor and greatly responsible for my recovery from sleepwalking and night terrors (also called sleep terrors).
When Kavey was a young physician at CUMC/NYPH, his mentor, Don Kornfeld, M.D., introduced him to the importance of sleep and its healing benefits for their patients. Kornfeld was especially interested in how cardiac patients’ and intensive care unit patients’ sleep was often disrupted and even disregarded. They were regularly awoken at all hours of the day or night for distribution of medicines, for physicians’ visits, and by the many noisy machines and interventions that saved their lives as well as the lives of the other critically ill who surrounded them. This is a problem that continues today and one which healthcare providers are always wrestling to solve. It is now called, “Post-Intensive Care Syndrome” or “Post Hospital Syndrome."
Kornfeld's interest in his patients’ sleep health sparked Kavey’s interest in the tremendously unexplored world of sleep. Kavey says, "Just as Jacques Cousteau was fascinated with the depths of the vast and mysterious sea, I have been fascinated with the depths of the vast and mysterious world of human sleep."
During his tenure at CUMC/NYPH’s Sleep Disorders Center, he treated countless patients whose nights (and therefore their days) had been turned on their heads from disordered sleep. He helped people heal from all sorts of sleep problems and became especially known for his expertise in the care of sleepwalkers and those who suffer from night terrors.
In 1990, after enduring sleepwalking and night terrors for over twenty years I had a terrible accident during an episode. For many years I had slept on a futon on the floor, knowing that it was safer. However, at the age of 30, in a show of false bravado, I bought a bed. My pattern had been to dash from my sleep in a somnambulant state, always in a panic that someone or something was coming to get me. My violent sleep patterns were symptoms of PTSD and intergenerational trauma. Both of my parents came from alcoholism and resultant violence. I inherited the sleepwalking and night terrors from my mother, and insomnia from my father.
On the night of the accident, I woke prone on the floor, struggling to my knees. I happened to be facing a full-length mirror that hung on my bedroom wall. I was in shock from the force of my fall and from waking up to the image of my bloodied face reflected in that mirror. Later I would realize, after piecing together what had happened, that I had run into my dresser, knocking myself out in the process, and had fallen, face-first to the hardwood floor. I had broken my nose, my bottom tooth had pierced my upper lip, I had a concussion, and I nearly lost two teeth.
As a struggling young actress in New York City, I was without health insurance and felt I could not go to the emergency room. Also, I was terrified that I would be committed to a psychiatric hospital. My oldest brother, Billy, suffered from schizophrenia, as had my maternal grandmother. While my sleepwalking started in adolescence, it turned dangerous with the added component of night terrors when my brother first attempted suicide – a sort of nighttime mirroring of his waking pain.
Lucky for me that on the morning after the sleepwalking accident, I found my way to my best friend’s family doctor, Dr. Michael Borecky. He was a close associate of Kavey’s and therefore recognized the severity of my situation. After treating my physical traumas, he pressed me to see Kavey. Shame had kept me from seeking help for so long, shame and denial.
I had known the names of my maladies since 1975 when, as a teenager, a friend’s older sister recommended I read one of the first articles written about sleep disorders. It was in Psychology Today.
The advice given to sleepwalkers, those with night terrors, and their families by the sleep experts who wrote the piece was to secure the somnambulists safely, as much as possible, at bedtime and to tolerate any disturbances such as their screams.
I had become an expert at tolerating my sleep disorders at the expense of my work and my relationships. Exhaustion stalked me. Fear of sleep turned me into a chronic insomniac; fear of other people seeing me in that "crazy" sleepwalking state turned me into a lonely and isolated young woman. Lack of sound sleep stunted my emotional growth rendering me unfit for intimacy.
The first thing that struck me about Dr. Kavey was his kindness, his amazing bedside manner. He seemed to witness my story with every fiber of his being. I told him I'd known about my sleep disorders since I’d read about them in the Psychology Today article at the age of 16. I felt at fault for not finding help sooner.
"Well, don't feel bad,” he replied, “Most sleepwalkers don't seek help until they hurt themselves or somebody else. The shame and denial are just that strong. When that article was written in 1975, there were only three sleep clinics in the whole country. Now there are more than 150. We've come a long way, even while our understanding of sleep is still in its infancy."
When I shared my long-standing fear of being misdiagnosed he said, "People with sleep disorders are misdiagnosed all the time, all kinds of misdiagnoses. I heard a narcoleptic speak at a conference once. She'd been scheduled for brain surgery until, luckily, a hospital resident recognized her symptoms during a preliminary procedure."
Dr. Kavey explained that sleepwalking and night terrors are parasomnias; sometimes called disorders of arousal as something breaks through, triggers them. Researchers don't know what exactly; in some cases, it's noise. Sleepers are propelled from deep, quiet non-REM sleep into partial wakefulness without going through the usual stages. During sleepwalking, half of a sleepwalker’s brain is asleep and half is awake. The part that controls movement is awake while the part that is responsible for executive functioning is asleep.
I told him I'd read about the term arousal disorders. He replied, "it's a pretty mild term for what, in sleepers like you, can impel you to have sustained such critical physical injuries." I let my tears flow freely than. "I am truly sorry for all you’ve had to endure, Ms. Frazier. We can help you. I am confident that we will have you sleeping soundly."
Shortly thereafter, I spent two consecutive nights at the CUMC/NYPH Sleep Disorders Center with twenty-five electrodes attached to my head and body. Most were affixed to my head to monitor my brain and eye activity. The 12 EEG pens scrawled over 2,000 pages during my two-night study in response to the electrodes. The machines monitored and measured my heart rates, brain and eye activity, breathing, muscle tension, and leg movements.
When I sat across from Dr. Kavey for my follow-up visit I found myself apologizing because I had not had a night terror or sleepwalking episode either evening. "Well," he replied, "somebody here recently had a very severe accident."
I thought he was referring to some other patient who'd stayed at the clinic. That's how strong my denial still was. "I'm sorry to hear that." As I spoke, my stomach sank for the sleepwalking stranger. "I hope they weren't hurt badly."
Dr. Kavey gave me an incredulous look. "Kathleen, I was referring to you. You had a severe accident from sleepwalking and night terrors." And then he said three words that changed my life forever: "You suffered enough."
Kavey prescribed a minuscule dose of Klonopin nightly as an anticonvulsant. The sleepwalking and night terror episodes create abnormally intense brain activity resembling a seizure on an EEG. Therefore, the Klonopin should help me remain still in me bed. It worked. I began sleeping the night through for the first time in over twenty years. Twenty years is a long time without good shuteye—about 7,500 nights and two-thirds of my life at that point. I felt joyful, saved. At the same time, I was unprepared for the deep well of grief. Following Dr. Kavey’s advice, I began a long road of therapy which helped me to unpack the heavy load of traumas that had fueled my sleep disorders.
After seven years on Klonopin and in therapy, Dr. Kavey helped me to wean off the medicine. Since then, I have not sleepwalked and I rarely, very rarely, have a mild night terror. They usually occur if I am stressed and overtired. I’ve continued healthy sleep through a combination of meditation, nutrition, exercise, therapy and hypnosis.
Soon after coming off the medicine I married a wonderful man. I truly believe healing around my sleep and intimacy issues made our union possible. I also started writing about my experiences. Art would serve as another kind of medicine-- the alchemy of art. I was finding my voice both towards my own continued health and to, hopefully, help other somnambulists to realize that recovery is possible. If you are having serious trouble sleeping, I urge you to seek help.
Dr. Kavey no longer sees patients but he continues on faculty at Columbia University Medical Center, leading sleep research and lecturing; sharing his wealth of knowledge about sleep with the next generation of physicians. I know there are many of us, both patients and healthcare professionals, who owe a great debt of appreciation to Dr. Kavey for his lifelong dedication to exploring the “depths of the vast and mysterious world of human sleep.” Thank you, Dr. Kavey, for your labor of love.
Parts of this article were originally published in Sleepwalker: The Mysterious Makings and Recovery of a Somnambulist.