Phantom of the Night: Chapter 1

Learning to breathe, sleep, and live

I am writing as a fellow sufferer and a patient to anyone who has sleep apnea syndrome (SAS). Every time I went to sleep, I snored and had pauses in my breathing. But I did not realize that many physical, intellectual, and emotional problems and my ever-present fatigue were related to how I slept. I wish that I could have read this book ten or twenty years ago, but nothing was available.

The purpose of writing this book is to provide you with information that can help you to return to a healthy, happy, and productive life. I hope to share with you information to enable you to assure your future. You may be one of uncounted millions of people with SAS who are trapped, as I was, in a half-asleep, half-alive underworld. This book provides information about treatments that sometimes seem miraculous in their effects. New advances in diagnosis and treatment could profoundly affect your life. As a patient, you can make better progress if you are well informed. Your experience, like mine and that of many others, may prove dramatic as you regain the wonderful ability to sleep well and thus live well. If you suffer from SAS, your problem may be more or less serious than mine. Fortunately, not everyone with SAS suffers the variety and depth of problems that I experienced. Certainly many with SAS suffer some degree of impairment, which may get worse unless it is recognized and treated.

People with SAS may find it hard to accept they have a problem, let alone deal with the idea that treatment may not be immediate and magical in every case. Although I met with many difficulties I believe that if I had been better informed, I could have overcome the problems and recovered faster.

More people, including doctors and other health professionals, are becoming aware of sleep disorders including SAS and offer us effective diagnostic and treatment alternatives. I recognize that some medical professionals don't want patients to hear about problems and difficulties in treatment for fear of discouraging someone from treatment. Nevertheless, I have described the impact on me and those close to me with the idea of sharing information and coping strategies. Much of this information may be useful to you only when you need a specific answer to your own situation.

My nightly struggle to sleep and breathe

Every night for at least 15 and probably for nearly 30 years, I was engaged in a life-and-death struggle. Two basic life forces were at war within me: the need to sleep and the need to breathe. This nightly struggle causes sleep apnea syndrome. Thus, sleep is a time of conflict rather than rest and recovery.

This exhausting struggle left me limping. I would awaken each morning not refreshed but like a battered warrior, ill prepared to face life's daily conflicts and challenges.

We must engage in another, daytime, struggle to regain health--to find the cause of our affliction and to obtain help. I learned that my adversary is called sleep apnea syndrome (SAS), or what I call "breath-less" sleep. I finally learned to wrestle with my adversary and have been blessed with the return of health and hope.

When I was having sleep problems, I never thought that anything was wrong with me. I felt that other people were unable to understand or appreciate me, and I could not understand why relationships never worked out. As the result of prolonged sleep deprivation, my behavior and responses had become abnormal; probably, subtle cues and behaviors had disturbed others or I was slow to respond. Later, when I was in treatment and feeling better, I understood what had been happening by seeing it happen to someone close to me who had been unhappy, lethargic, down, and depressed. My friend had been unsuccessful in his efforts to study or to find work. I could not find a way to motivate or help him. However, when his sleep disorder (not SAS) responded to treatment, he became a different person, easier to be around and with a lot more energy. I could see dramatic changes in his personality. And I realized that similar changes had come to me, changing me from a lethargic, depressed person back to my normal mode of enthusiasm and energy.

The path to recovery

My family life and business were casualties of my hidden sleep disorder. Doctors and psychiatrists on two continents failed to diagnose and treat my SAS. Finally, when SAS was suspected, it took two years of visits to sleep laboratories and doctors to get the treatment to work. When I began to get some relief--about one to three hours of treated sleep a night--I looked for ways to make the treatment more effective. I searched for a book about the subject but could find only one short article. I called the author of the article, T. Scott Johnson, M.D., a leader in sleep disorders medicine. I told him that I wished I had read that article years ago. I asked if he could recommend any books. He did not know of a suitable book to recommend. Within a few minutes, we decided to write a book for people with SAS. We wanted to make it possible for each person to get control of their treatment and their lives.

Dr. Johnson's wisdom as a physician shows in his desire to learn about the perceptions and needs of patients--if only every doctor listened so well. He recognizes that recovery and health are made up of more than medicine and technology. I have had the privilege of learning from Dr. Johnson the answers to the questions that an SAS patient might ask a doctor. He took me to lectures and meetings and introduced me to other leading researchers and experts. Using that knowledge, I have been able to cooperate more effectively with my own personal physician, doctor, sleep disorders physician, and other sleep specialists. Now, by working with my physician, other experts, and other patients, I have learned how to improve my treatment success. Although some problems remain, I average six to eight hours of sleep per night--and I feel good.

I am no longer exhausted, confused, irritable, and depressed. I look forward to each day; the days are not long enough to do everything that I want to do. For the first time in many years, I am able to use my mind and intellect fully. Shadowy barriers that impeded my every thought and move have fallen away. Difficult personal and business relationships have become more rewarding. I am experiencing a continual transformation to an improved outlook, increased energy, and excitement in being alive. It's like falling in love--every ordinary experience is invested with new beauty and meaning. I feel a youthful vigor and enthusiasm that I have not known for many years. I am able to work much more efficiently as the treatment for my sleep apnea condition becomes more effective.

Treatment is a collaboration of many partners. In this book, Dr. Johnson and I have distilled the experience and knowledge won from research and treatment by many pioneering scientists, doctors, psychologists, therapists, nurses, technicians, and others in the healing professions as well as patients.

My wish for each of you who suffer from sleep apnea syndrome is that you will soon experience a full, speedy recovery and hear your spouse, friends, children, and associates exclaim about your miraculous return to health. And may it happen in ten days, not in ten months or ten years.--J.H.

You can do something about fatigue.

Being tired all the time is not normal or healthy, and may be dangerous--causing car accidents, for instance. You may be sleepy in the daytime for many reasons. Perhaps you are holding down two jobs or working a night shift. Maybe you just don't take the time to get the sleep you need. However, if you snore and experience daytime fatigue or you can't stop yourself from falling asleep during the day, you may be suffering from sleep apnea syndrome (SAS). This condition affects millions of people and is truly a phantom of the night-hidden from you while you sleep so you may never suspect it.

When you go to sleep, the muscles of the throat relax as a normal part of the sleep process. However, this relaxation may lead to a partial closure of the throat, causing a vibration that we hear as snoring. In individuals with SAS, this relaxation progresses to the point where the passage for air is blocked completely, which stops the breath. The brain responds by waking the patient up a little to open the air passage. Breathing begins again, but the natural sleep cycle is interrupted. Sleep apnea refers to the disruption of sleep by a blockage of breathing; apnea means "without breath."

Benefits of treating sleep apnea

Sleep disorders may rob you of your capacity to enjoy life and keep you from your goals, no matter how hard you try. Treatment can help most people who have SAS. With successful treatment, you can:

  • Add more years to your life and improve its quality.
  • Feel alive, strong, more vigorous.
  • Have the energy and drive to achieve what you set out to do each day.
  • Wake up refreshed each morning.
  • Wake up without a headache.
  • Be more intelligent and competent.
  • Have better relationships with those close to you.
  • Be more successful in your work (or education).
  • Be able to take better care of your family.
  • Stop feeling depressed.
  • Avoid a heart attack or stroke.
  • Lose weight more easily.
  • Have interest in and enjoy better sex.
  • Have more enjoyment and fun in life.
  • Be in control of your life.

To individuals with SAS

Focusing on the most common type of sleep apnea, called obstructive sleep apnea, this book provides information for people suffering from sleep apnea syndrome (SAS) and may also be useful to people with severe snoring, which may also disrupt sleep. Other, rarer types of sleep apnea will not be discussed. The book will give you the essential information you need to begin the journey to diagnosis and treatment. We encourage you to start or continue a dialogue with your family and doctor that could lead to your recovery and the realization of your potential. Together you can identify most causes of daytime sleepiness and perhaps achieve dramatic improvement.

To the spouse, child, friend, or colleague

You can play an important role in the recovery of your friend, loved one, or colleague by offering patience and support. Sleep disorders are insidious and hard to identify and may cause symptoms and problems that have no apparent connection to sleep. The information in this book can help you understand the medical, technical, emotional, social, and psychological issues confronting the sleep apnea patient, and enable you to contribute to his or her recovery.

A word of caution

Our mission is to help bridge the gap between scientific medicine and the people whose lives it could transform. The purpose of this book is to help you, the reader, work with your doctor to determine if you have sleep apnea syndrome, to obtain a diagnosis, and to seek treatment and rehabilitation using appropriate medical, professional, personal, family, and community resources.

While we encourage you, the patient, to be an informed and active consumer of medical services, nothing in this book is intended to replace medical advice. Only your doctor, working with you, can make professional medical decisions that are right for you. Perhaps the single message of this book is to encourage you to work with your doctor: Please don't attempt to diagnose or treat yourself alone. For additional information, please consult your physician and the associations and support groups listed in Appendix A .

A challenge for patients, doctors, and society

SAS--an urgent problem

Millions of working people in the United States are debilitated from the struggle to breathe during sleep. In the New England Journal of Medicine (April, 1993), Terry Young and others reported on a study of working, middle-aged Americans. Based on their research, the frequency of disturbed breathing during sleep has been estimated at 24 percent for men and nine percent for women while the frequency of clinically important sleep apnea is estimated at four percent for men and two percent for women. No wonder Dr. Eliot Phillipson, in an editorial which appeared in the same publication, has called sleep apnea "a major public health problem." There may be as many as 30 million snorers in the United States, about 12 percent of the population. Snoring may indicate the presence of SAS, and may itself disrupt sleep.

The problems caused by snoring and SAS can be treated. We believe that urgent efforts to identify and treat SAS sufferers, especially those who are severely affected, should be made. But the resources to treat so many people are not available. In the United States, there are over 250 accredited and an estimated 500 to 1,200 or more nonaccredited sleep laboratories, each capable of handling 200-300 patients a year. Even if all these laboratories were to devote their entire resources to the diagnosis and treatment of SAS, it would take 25 years to handle the backlog of untreated sufferers in the United States. If more of these sufferers were to seek treatment, the existing facilities would be overwhelmed. Yet most people who suffer from SAS aren't even aware of the name or nature of their problem, so they don't know how to seek treatment.

SAS in the national health care debate

Clearly, society needs to inform and educate sufferers while creating the capacity to treat them. Despite the large number of people suffering from sleep disorders, including sleep apnea syndrome and snoring, these problems are hardly mentioned in the national debate about health care costs and priorities in the United States. Here is a major health problem which, thanks to scientific and medical progress, can be readily treated. Yet society has not yet allocated the resources to educate the public to help identify and overcome it. Nor has society yet provided an adequate supply of trained people and institutions that would suffice for the diagnosis and treatment of SAS. A comprehensive program would include financing for public education, a treatment system, and continuing research and professional education. The costs of such a program would more than likely be small compared to the economic benefits for society as well as for the individual sufferer.

According to Daniel Callahan, a writer on medical ethics, we are faced with a health care system whose costs steadily rise. In his provocative book, What Kind of Life, he suggests that society must seek to balance the economic costs of health care with the goals and needs of both society and the individual. Because the ability to pay for health care is limited, Callahan sees the need to establish priorities and to allocate finite resources. He therefore proposes allocating available resources to treatable diseases where the patient will receive clear benefits. Currently available medical or surgical therapies to treat sleep apnea syndrome meet the criteria set forth by Callahan. Successfully treated patients can expect a longer life span, a marked improvement in cognition and ability to function, and the restoration of a healthy emotional outlook. Public education, identification of patients, and treatment for those severely affected by sleep apnea syndrome should be made a high national health care priority.

Strategies for the future

Important programs to educate health care professionals, the public, and physicians have been initiated. Following the recommendations of the National Commission on Sleep Disorders Research, a National Center on Sleep Disorders Research (NCSDR) has been created within the National Heart, Lung, and Blood Institute of the National Institutes of Health. The NCSDR will serve four key functions: to focus and coordinate a wide range of activities in sleep and sleep disorders, to support basic and clinical research, to train scientists, and to transfer technology to health professionals, policy makers, patients, and the public. A study of the cardiopulmonary consequences of sleep apnea is planned.

In another effort, William Dement has initiated a program--the Stanford University Sleep Disorders Awareness Project--that is designed to prepare the practicing physician and other health care professionals to identify, treat, and manage sleep apnea and other sleep disorders. This training program teaches practical procedures adapted to the routines of the primary care physician, enabling them to recognize the presence of sleep apnea and to manage treatment. Since primary care physicians have many patients under treatment for fatigue, high blood pressure, and other problems which may actually be related to sleep apnea syndrome, Dement hopes to disseminate the knowledge of sleep medicine into the routine practice of community medicine.

Clearly, physicians, scientists, manufacturers, and others need to develop innovative alternative strategies for diagnosis and treatment to cope with this enormous health problem.... Technological advances, coupled with public and professional education and innovative health care strategies, may bring relief to the millions who suffer from sleep apnea syndrome.

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