Introduction

Learning to breathe, sleep, and live

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You can escape a living death.
Patient to patient

I am writing as a fellow sufferer and a patient to anyone who has sleep apnea syndrome. 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 10 or 20 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 sleep apnea syndrome 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 sleep apnea syndrome, your problem may be more or less serious than mine. Fortunately, not everyone with sleep apnea syndrome suffers the variety and depth of problems that I experienced. Certainly, many with sleep apnea syndrome suffer some degree of impairment, which may get worse unless it is recognized and treated.

My personal perspective is that of a male, overweight, and approaching "senior" status who has a rather severe form of sleep apnea. But scientists and clinicians have discovered that you don't have to be overweight, male, or middle-aged to have one of the disorders of breathing during sleep. Young men and women are not immune from snoring, sleep apnea, and other forms of sleep-disordered breathing. These conditions tend to worsen over time. The severe consequences of untreated sleep-disordered breathing are all too familiar to me from personal experience, and the ongoing research is revealing just how severe the consequences can be. If you have a mild form of disease, you may not readily identify with my experiences, and you may have a number of concerns that can make treatment seem too bothersome. A nightly bed time treatment may seem incompatible with a romantic relationship. Your self-image, as a young, attractive, vibrant person may seem threatened by the reality of a condition which may require a life-long course of treatment. I hope you will balance these negatives against the benefits of appropriate treatment that can keep your life and potential from being limited by a treatable condition.

People with sleep apnea syndrome may find it hard to accept that 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 sleep apnea syndrome 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, 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 sleep apnea syndrome) 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 sleep apnea syndrome. Finally, when sleep apnea syndrome 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 sleep apnea syndrome. 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 a sleep apnea syndrome 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, 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 seven to eight hours of sleep each 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.

Although we don't have nearly enough studies to show all the benefits of effective treatment of sleep apnea, I know from personal experience that treatment restores a normal outlook, enables intellectual capability, and restores physical energy and stamina. At an age when my college classmates are enjoying retirement, I have been building a publishing business, doing consulting, and creating a new life. For almost a decade I was a consultant to an entrepreneurial company in the health field, doing research and writing business plans that helped this fast-moving company to profit and grow. My experience is a testimony to the value of treatment.

Treatment, like making a book, is a collaboration of many partners. In this book, Drs. Johnson and Broughton and I--with the assistance of many others--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.

Apnea is often overlooked. But after we have learned to recognize it, we may notice it in family members, friends, and colleagues. We may even find indications of apnea in literature, ancient writings, and the Bible. The Book of Job narrative is a complex and multilayered weaving together of descriptions of physical and emotional sickness and health in the context of religious philosophy and an extraordinary dialog between Job and God. It does not diminish the value of the Book of Job as a profound work of poetry, philosophy, and religion to note that many of Job's symptoms are suggestive of sleep disorders including apnea. Job is portrayed as a man who suffers physical and emotional distress during the day, while his sleep is disturbed by insomnia, nightmares, choking, and gasping for breath--a feeling of being strangled. His fortunes take a turn for the better after he experiences major weight loss--even today, one of the best treatments for apnea. The narrator's evocative depiction of disturbed sleep shows keen powers of observation, as demonstrated in the epigraph from the Book of Job on page vi.

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.--JH

You can do something about fatigue

Being tired all the time is not normal or healthy, and may be dangerous--causing car crashes, 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. 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 sleep apnea syndrome, 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 sleep apnea syndrome. With successful treatment, you may enjoy many of the following benefits:

  • Avoid the risk of losing years of your life.
  • Improve the quality of your life.
  • Feel alive, strong, more vigorous.
  • Have the energy and drive to achieve what you set out to do each day.
  • Be alert and not struggling to stay awake.
  • Lower the risk of car crashes due to reduced alertness or falling asleep.
  • Wake up refreshed each morning.
  • Wake up without a headache.
  • Avoid the loss of your intelligence and competence.
  • 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.
  • Lower your blood pressure and reduce your risk of 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 sleep apnea syndrome

Focusing on the most common type of sleep apnea, called obstructive sleep apnea, this book provides information for people suffering from sleep apnea syndrome and may also be useful to people with severe snoring and other problems that restrict the flow of air and may also disrupt sleep. 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 dialog 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.

Success with CPAP treatment for sleep apnea can restore normal sleep and make you feel reborn and wonderful. The initial days and weeks are crucial to long-term success. You need positive reinforcement--which you get if the treatment is working. But success may be hard-won. There are many reasons that you, a person with sleep apnea, might sooner or later experience treatment problems. If you have difficulties, troubleshooting from a qualified professional (your sleep doctor or therapist) or others with sleep apnea can be invaluable. You will benefit from support from your family as well as your physicians. But you are the best person to raise questions and you are the person who must follow through every night. This is a guide to help you understand your sleep disorder, and understand and participate in the process of diagnosis and treatment, and finally to overcome the most common problems seen by physicians in the treatment of sleep apnea or reported by patients.

Responsible
self-management

We advocate a model in which the person with sleep apnea and the family take on a major responsibility for self-management in close collaboration with the physician. Traditionally, doctors think in terms of compliance--the doctor figures out what might be wrong and how to fix it and writes a prescription or order for the patient to follow. The implication in talking about a patient complying is that the patient is supposed to do something he or she would otherwise not do, such as following an order. The compliance model does not necessarily provide the best results in a chronic condition like sleep apnea. Instead, the keys to success are patient awareness and education along with an open channel of communication with the medical team. It is more likely that a patient will follow through with using CPAP and adhere to treatment if treatment is working for him or her; thus we focus here on dealing with factors that could possibly defeat successful therapy. The treatment of sleep apnea is a nightly ritual and the results are apparent every day. The person with the sleep apnea is best positioned to observe the results, notice problems, and take action to make the treatment work. We attempt to provide you with adequate understanding of the principles and methods of treatment as well as specific problems so you can act independently while communicating with and collaborating with the medical team: primary care doctor, sleep expert, and home care provider. Such collaboration should lead to a prompt resolution of treatment problems and to your improved health and well-being.

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.

How to read and use this book

You can use this book in different ways depending on your needs, and it is designed to be read selectively, first to provide an introduction and overview, and second to serve as a handbook and source of reference to deal with issues as they arise.

We suggest reading the following materials first for an introduction and overview. This Introduction and Chapters 1-3 are the core of the book and should provide you with a solid understanding of sleep apnea, snoring, and other disorders of breathing during sleep. Chapter 2 can help you recognize the possibility you may have a sleep disorder, such as sleep apnea, and find appropriate help to seek a diagnosis. See Questions to identify sleep apnea syndrome. If you have sleep apnea, you may face life-threatening risks when you have anesthesia or receive certain medications as part of surgery or procedures for medical or dental conditions. We urge you to learn what you can do to assure your well-being in these circumstances. See Hospitalization with CPAP. See Cautions Before Surgical, Medical, Dental, or Radiological Procedures.

The balance of the book can be read in any order to meet your own interests and needs. If you want to prepare for and understand the overnight sleep studies used to diagnose and treat sleep disorders, you will find Chapter 4 helpful and you can skim or study Chapter 5 for a better understanding of how the sleep specialist interprets the results of your study, and appreciate the significance of your own test results.

Chapters 6 and 7 describe how CPAP treatment works and some of the things you can do to get the most benefit from this treatment.

Chapters 8, 9, and 10 explain some of the things you can do to further improve your sleep, and additional things you can do during recovery to complement your medical treatment. You will also find a review of several forms of treatment including oral appliances, surgery, weight loss, and more.

Chapter 11 provides answers to Frequently Asked Questions. You might want to skim it when you start treatment, and refer to it for detailed answers to specific questions and problems as they arise.

Chapter 12 will be of interest to you concerning your children or grandchildren; it introduces some of the more common problems of sleep among children and adolescents.

Chapter 13 is an overview of the science of sleep medicine, with a focus on sleep-disordered breathing. Who has sleep disorders? What are the causes of sleep disorders? What harm is done by sleep disorders? What is known about treatments and other interventions--are they effective?

The Afterword is a personal statement of Dr. Broughton's hopes and frustrations in treating people with sleep disorders.

Do explore the several sections providing additional resources, including listings of books, reference materials, Internet sites, listings of organizations and manufacturers, and more. There are forms for keeping a sleep log or diary and important information for hospitalization, day surgery, and other dental and medical procedures.

You may notice that some ideas are repeated in different parts of the book; this is because we have tried to make each chapter relatively self-contained. That is done to help you use the book as a reference to answer particular questions as they may arise. The Glossary will help you to deal with medical terms and abbreviations. You can use the Index to go directly to a specific topic, although the Appendixes are not covered by the Index.

Some basic terms and definitions

Apnea and other sleep-disordered breathing

This book focuses primarily on sleep apnea syndrome. Sleep apnea is a condition in which the flow of air is stopped completely during sleep despite continuing efforts to breathe. Apnea is the worst case of a spectrum of disruptions of breathing during sleep, and all together they are called sleep-disordered breathing. They include hypopnea, which is a reduction in airflow; snoring, which restricts and disrupts airflow; and upper airway resistance syndrome (UARS), which is a very subtle, hard-to-detect restriction in airflow. We discuss all of these conditions. Some terms are often used interchangeably: sleep apnea, obstructive sleep apnea (OSA), sleep apnea syndrome, and obstructive sleep apnea syndrome (OSAS); some experts refer to sleep apnea/hypopnea syndrome (SAHS). Sleep apnea and obstructive sleep apnea refer to the stoppage of air flow caused by an obstruction.

Sleep apnea syndrome (SAS) refers to sleep apnea accompanied by excessive daytime sleepiness and/or high blood pressure; obstructive sleep apnea syndrome (OSAS) is the same as sleep apnea syndrome. In British sources the spelling "apnoea" is found.

The importance of breathing

Life depends on breathing. Oxygen is part of the air we breathe into our lungs, where it is captured by the blood and carried throughout the body. When food is combined with oxygen, energy is released. The waste products include carbon dioxide, which is carried by the blood back to the lungs where it is exhaled.

The control of breathing is a complex, dynamic system which is essential to life and well-being. Since the brain begins to die in the absence of oxygen, breathing difficulties are a potential threat to survival. Just hold your breath for a half-minute or longer, and feel how quickly you feel suffocated and panicky! This is part of your built-in alarm system helping to protect your breathing. This may explain why even the mildest forms of breathing difficulty are enough to arouse a person from sleep. Awake or asleep, the brain monitors the levels of oxygen and carbon dioxide in the blood and uses this information to regulate how fast we breathe. Thus, if we are burning a lot of energy, more carbon dioxide is produced, more oxygen is needed, and breathing needs to go faster.

The causes of sleep-disordered breathing

We take breathing for granted, but it is a complicated process that must constantly be monitored and controlled by the brain. There are several possible contributing causes (sometimes called risk factors) of sleep-disordered breathing that may operate separately or in combination to affect your sleep. They include the shape and size of your upper airway, as affected by your skull, nose, jaw, tongue, and other tissues surrounding the airway. Overweight and obesity can cause or contribute to sleep-disordered breathing. The nerves and muscles that keep the airway open during the day may not be active enough during sleep. The areas of the brain responsible for maintaining the upper airway may be defective or underactive, either from an inborn cause or from some injury. The brain relies on continuous measurements of chemicals in your blood, such as oxygen or carbon dioxide, and the sensors may be ineffective.

Some of these sources of sleep-disordered breathing may be inherited, others caused by accident or disease, and others may be within our control. They may respond to medical or surgical intervention, or to lifestyle changes. Scientists are attempting to better understand the causes and mechanisms of breathing difficulties during sleep in order to use this understanding to find better ways to prevent or treat sleep-disordered breathing.

What sleep-disordered breathing does

The main immediate effects of sleep-disordered breathing include (1) lowering the level of oxygen and raising the level of carbon dioxide in the blood; (2) an increase in breathing effort; (3) arousals (a disturbance of sleep that may not be known to the sleeper) and (4) awakenings. In various ways--scientists have not completely identified the connections--these effects can lead to a wide variety of symptoms and can even increase the risk of death as well as disease.

Treatment for apnea and other sleep-disordered breathing

There are several recognized treatments for apnea and other sleep-disordered breathing. These include weight loss, oral appliances, and surgery as well as positive airway pressure. Positive airway pressure systems deliver air to the nose and/or mouth in order to keep the airway open and prevent it from collapsing. The pressure created by an electrical blower is delivered through an interface, usually a mask covering the nose or inserted in the nose (nasal CPAP); to the nose and mouth using a full-face mask; or even to the mouth. CPAP or PAP is often used to refer to any type of positive airway pressure device or treatment.

There are several types of positive pressure devices for creating the positive airway pressure (PAP) used to treat sleep apnea:

  • continuous positive airway pressure (CPAP)--one constant pressure,
  • bilevel--one pressure while inhaling, another while exhaling,
  • and automatic positive airway pressure (APAP)--automatic titration (self-adjusting, and determining the effective treatment pressure according to patient requirements).

Conventions used in this book

References and links to information on the Internet are set off by the characters, "< >" which are not part of the Universal Resource Locator (URL) or Internet address. The URL,
<http://www.HealthyResources.com/>, is entered in your browser as http://www.HealthyResources.com/
or as www.HealthyResources.com/
or even as HealthyResources.com.

Cautions and warnings are printed in a distinctive format.

 

Cautions alert the reader about a risk for potential personal injury or health problem, or possible damage to equipment or materials.

 

Warnings alert the reader for possible danger to human life, where serious health problems or injury may occur, or death may result.

A word of concern

This handbook is based on the clinical experience of T. Scott Johnson, M.D., William Broughton, M.D., the personal experience of Jerry Halberstadt, contributions by sleep professionals, and online discussions of professionals and patients, including questions submitted by readers of Phantom of the Night, and by visitors to the Web sites <http://www.newtechpub.com> and <http://www.HealthyResources.com>. Material expressing the personal viewpoint of one of the authors is set off by the author's initials and a distinctive type style.

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. We hope you find the information we present helpful; but please be advised, it is not intended as professional advice for revising your treatment. 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. For additional information, please consult your physician and the associations and support groups listed in See Directory of organizations and manufacturers.

 

See and talk with your own doctor or other qualified professional before you make any change to your prescribed treatment program.

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