Epilepsy - Patient & Family Guide by Devinsky

From Barnes & Noble

This expert presentation of the clinical and social problems experienced by those with epilepsy has just been updated with the latest treatment options. By emphasizing quality-of-life issues, it offers unique guidance to patients and physicians alike.

From the Publisher

This easy-to-read guide for lay persons offers an overview of the medical and social topics relevant to epilepsy, including diagnosis and treatment, epilepsy in children and adults, legal and financial issues, and available resources. Includes a complete glossary of terms and anti epileptic drugs, plus tables and illustrations.

[BOOK JACKET]:
Vincent Van Gogh is an inspiration for all of us. His artwork--like the beautiful sunflowers on the cover, for example--is a constant reminder of how he fulfilled his potential in spite of living with epilepsy. so can you.

In this Second Edition, epilepsy expert Dr. Orrin Devinsky provides you with an easy to read guide to understanding the disease so that you can maintain a high quality of life.

Ideal for adults with epilepsy or for parents of children with the disorder, the reader will learn about:

• The nature and diversity of seizures
• The factors that can cause seizures or help to prevent them
• The risks and benefits of the various antiepileptic drugs
• Medical and surgical therapies for seizures
• Various ways your diet affects seizures

Doody Review Services

Reviewer: Jesse Taber, MD (University of Illinois at Chicago College of Medicine)
Description:This is a comprehensive review of the medical and social aspects of seizures, written for patients and their families. It is divided into six parts covering medical aspects, diagnosis and treatment, epilepsy in children and adults, legal and financial aspects, and resources for people with epilepsy.
Purpose:The purpose is to empower people with epilepsy toward achieving a better quality of life, a topic on which the author has widely published.
Audience:Although this book is written for the layperson, it is a wonderful review for any health care worker, whether physician, nurse, or social worker, involved in the care of people with epilepsy. And for patients and their families, it is a wonderfully complete and readable source.
Features:This is a compact paperback, with a well organized table of contents and complete index. There is a wealth of useful information regarding day-to-day living, including some very thoughtful chapters on parenting, pregnancy, and family and personal relationships. The book also contains explanations of legal rights, employment, and medical insurance. There are a limited number of relevant illustrations and photographs, including patients undergoing EEG testing, neuroimaging procedures, diagrams of neuroanatomy, and color photographs of anticonvulsant medications. The last 14 pages of text contain definitions of medical terminology, selected references, and addresses of pertinent organizations.
Assessment:This is a superbly written book. The author's style is concise, yet clearly explainscomplicated medical issues. His tone throughout is marked by his obvious concern and respect for people with epilepsy. As a neurologist whose practice is largely focused on adults with epilepsy, I am now advising all of my newly diagnosed patients (and most of those with known seizure disorders) to get this book. I will also recommend that our neurology residents read this book, for it provides a window into the lives of our patients and can empower us as well.

Product Details

• Table of Contents
• Forewords & Introductions
• Read a Sample Chapter

Table of Contents

Forewords & Introductions

PREFACE

Vincent Van Gogh's "Sunflowers" appears on the cover of this book because that great artist is an example of a person who fulfilled his potential in spite of epilepsy. Because we often fear the unknown, the uncertainties created by a diagnosis of epilepsy may give individuals more difficulty than do the seizures themselves. The main goal of this book is to help people with epilepsy-whether they have a new diagnosis or have been living with epilepsy for years-to understand the disorder and learn about the nature and diversity of seizures, the psychological and social implications of seizures and the diagnosis of epilepsy, the educational and vocational effects, and the medical and surgical therapies for seizures. My real motivation for writing this book, however, was to empower people with epilepsy with knowledge that will remove the fears fueled by misinformation. I want to encourage these people to assume a greater role in their medical care, help them to understand the importance of independence and self-esteem, and give them information that will assist them in their efforts to achieve a better quality of life.

The world views epilepsy through the eyes of those who are most directly touched by it. Many patients and families are embarrassed and fearful about epilepsy and try to hide it. It provokes discomfort in them and lowers self-esteem. These attitudes become self-fulfilling and magnified in the outside world. Do not fear the word "epilepsy." Understand epilepsy, and the world will follow your lead.

Knowledge is power: Education about epilepsy is key. Adults with epilepsy, or the parents of children with epilepsy, should understand the types of seizures, the risks and benefits of the various antiepileptic drugs, the factors that can cause seizures or help prevent them, and which activities are safe and which are dangerous. Education about epilepsy can come from pamphlets and books, the Internet, videotapes, support groups, health care workers, conferences, and the Epilepsy Foundation. A new website, www.epilepsy.com, is devoted to fostering more knowledge about epilepsy through the innovative presentation of information, including editorials about topics such as medications and their side effects, online access to nurses and doctors, access to research studies, presentations about alternative therapies, and other epilepsy-related topics. The site encourages patients and families who are affected by epilepsy to share their views about their experiences. Although most of my own medical information about epilepsy comes from textbooks, scientific articles, and professional lectures, the people I have cared for-my patients and their families-have been my greatest source of knowledge about living with epilepsy.

A little knowledge, however, can be confusing and frightening. For instance, anyone who reads the Physician's Desk Reference, which describes all the prescription drugs on the market, will be surprised to learn about the many side effects of antiepileptic drugs. The list seems almost endless. Some of these effects are serious, even fatal. But the risks must be weighed against the benefits. For a child who is having so many absence seizures that the ability to learn, play, and socialize with other children is affected, the benefits of medication outweigh the risks. An antiepileptic drug may have a 1 in 100,000 chance of causing death, and although the fear of this chance is real, it should not deter someone from using the drug if the potential benefits are substantial. Adults with epilepsy should become advocates for themselves. Parents of children who have epilepsy should become their advocates. They should speak out if the medical care seems wrong or violates common sense. If they are dissatisfied with the seizure control or the negative side effects of therapy, they should discuss them with the doctor. The current regimen may truly be the best possible one, but sometimes a second opinion is helpful. Parents of a child with epilepsy also must make sure that the child's educational needs are met, as provided for by law. Perhaps even more important, they should nurture the child's independence. Adults with epilepsy must make sure that their rights to employment and their driving privileges are fairly considered. The safeguards against discrimination in the Americans with Disabilities Act and other legal provisions are described in this book.

This book can be read from cover to cover, or certain sections or chapters can be chosen. Because epilepsy presents different problems and challenges at various stages of life, information pertaining to infants, children, adolescents, adults, women of childbearing age considering parenthood, and the elderly are treated separately. The appendixes provide additional information that will help the reader to understand the terminology used in talking or writing about epilepsy, to become familiar with the different antiepileptic drugs, to find helpful resources, and to learn more about the disorder from further reading.

I hope people whose lives are touched by epilepsy find this book informative. If it answers their questions about epilepsy, removes their doubts, dispels their fears, and builds their confidence through knowledge, then it will have served its purpose. I will welcome any suggestions that could help a third edition better achieve this goal.
---- Orrin Devinsky, MD, New York, NY

Read a Sample Chapter

Chapter 1 -- Facts About Epilepsy

Epilepsy has afflicted human beings since the dawn of our species and has been recognized since the earliest medical writings. We now understand that epilepsy is a common disorder resulting from seizures that temporarily impair brain function. Few medical conditions have attracted so much attention and generated so much controversy. Throughout history, people with epilepsy and their families have suffered unfairly because of the ignorance of others. Fortunately, the stigma and fear generated by the words "seizures" and "epilepsy" have progressively diminished during the past century, and most people with epilepsy now lead normal lives.

The Greek physician Hippocrates wrote the first book on epilepsy, titled On the Sacred Disease, around 400 BC. Hippocrates recognized that epilepsy was a brain disorder, and he refuted the ideas that seizures were a curse from the gods and that people with epilepsy held prophetic powers. False ideas die slowly, though, and for centuries epilepsy was considered a curse of the gods, or worse. For example, in a 1494 handbook on witch-hunting, Malleus Maleficarum, written by two Dominican friars under papal authority, one of the characteristics said to identify witches was the presence of seizures. The Malleus brought about a wave of persecution and torture and led to more than 200,000 women being put to death. In the early 19th century, people who had severe epilepsy and people with psychiatric disorders were cared for in asylums, but the two groups were separated because seizures were thought to be contagious. In the early 20th century, some U.S. states had laws forbidding people with epilepsy to marry or become parents, and some states permitted sterilization.

The modern medical era of epilepsy began in the mid-19th century, under the leadership of three English neurologists: Russell Reynolds, John Hughlings Jackson, and Sir William Richard Gowers. Still standing today is Hughlings Jackson's definition of a seizure as "an occasional, an excessive, and a disorderly discharge of nerve tissue on muscles." Hughlings Jackson also recognized that seizures could alter consciousness, sensation, and behavior.

The past century has brought an explosion of knowledge about the functions of the brain and about epilepsy. Research in epilepsy continues at a vigorous pace, with investigations ranging from how microscopic particles in the cell trigger seizures, to the development of new antiepileptic drugs, and to a better understanding of how epilepsy affects social and intellectual development.

The word "epileptic" should not be used to describe someone who has epilepsy, as it defines a person by one trait. A label is powerful and can create a limiting and negative stereotype. It is better to refer to someone as "a person with epilepsy" or to a group of people as "people with epilepsy."

Because some people fear the word "epilepsy," they use the term "seizure disorder" in an attempt to separate themselves from any association with it. A person who has had two or more seizures has epilepsy, even if the problem first develops in adulthood or is known to be caused by something like a head injury or a tumor (see Chapter 2).

Epilepsy is a disorder of brain function that may or may not be associated with damage to brain structures. Temporarily disturbed brain function can also occur with extreme fatigue; with the use of sleeping pills, sedatives, or general anesthesia; or with high fever or serious illness. "Brain damage" implies that something is permanently wrong with the brain's structure. It may occur with head injury, cerebral palsy, or stroke. Injuries to the brain are the cause of seizures in some persons with epilepsy, but by no means all of them. Brain injuries range from undetectable to disabling. Although brain cells usually do not regenerate, most people make substantial recoveries after brain injuries. Brain damage, like epilepsy, carries a stigma, and some people may unjustly consider brain-injured patients "incompetent."

Many people mistakenly believe that people with epilepsy are also mentally handicapped. In the large majority of cases, this is not true. Like any other group of people, people with epilepsy have different intellectual abilities. Some are brilliant and some score below average on intelligence tests, but most are somewhere in the middle. They have normal intelligence and lead productive lives. There are some people, however, who have epilepsy associated with brain injuries that cause neurological impairments, including mental handicap. With only very rare exceptions, seizures do not cause mental handicap.

The belief that people with epilepsy are violent is an unfortunate image that is both wrong and destructive. Most people with epilepsy have no greater tendency toward irritability and aggressive behaviors than do other people. Many features of seizures and their immediate aftereffects can be easily misunderstood as "crazy" or "violent." Unfortunately, police officers and even medical personnel may confuse seizure-related actions with these negative behaviors. However, the behavior relating to a seizure merely represents semiconscious or confused actions resulting from the seizure. Some people having a seizure may not respond to questions, speak gibberish, undress, repeat a word or phrase, crumple papers, or appear frightened and scream. Some people are confused immediately after having a seizure, and if they are restrained or prevented from moving about, they can become agitated and combative. Some people may be able to respond to questions and carry on a conversation fairly well after a seizure, but several hours later they will have no recollection of the conversation.

In some people, problems associated with epilepsy, such as injury to specific brain areas or sensitivity to certain medications, can contribute to aggressive or confused behavior. The issue of aggression and epilepsy is discussed in Chapter 28. Anxiety and depression may be slightly more common among people with epilepsy.

Some people have difficulty with memory and other intellectual functions after a seizure. These problems may be caused by the aftereffects of the seizure on the brain, the effects of antiepileptic drugs, or both. Usually, however, these problems do not mean that the brain has been damed by the seizure. In some people, there may be a cumulative, negative effect of many tonic-clonic or complex partial seizures on brain function.

Most cases of epilepsy are not inherited, although some types are genetically transmitted (that is, passed on through the family). Most of these types are easily controlled with medication.

Most persons with epilepsy have seizures and require medications for only a small portion of their lives. Most childhood forms of epilepsy are outgrown by adulthood. For many forms of epilepsy in children and adults, when the person has been free of seizures for 2 to 4 years medications often can be slowly withdrawn and then discontinued under a doctor's supervision.

Epilepsy has nothing to do with curses, possession, or other supernatural processes, such as punishment for past sins. Like asthma, diabetes, and high blood pressure, epilepsy is a medical problem.

Epilepsy is perfectly compatible with a normal, happy, full life. The person's quality of life, however, may be affected by the frequency and severity of the seizures, the effects of medications, and associated disorders. Some types of epilepsy are harder to control than others. Living successfully with epilepsy requires a positive outlook, a supportive environment, and good medical care. Coping with the reaction of other people to the disorder can be the most difficult part of living with epilepsy.

Acquiring a positive outlook may be easier said than done, especially for those who have grown up with insecurity and fear. Instilling a sense of self-esteem in children is important. Many children with chronic medical illnesses -- such as epilepsy, asthma, or diabetes -- have low self-esteem, perhaps caused in part by the reactions of others and in part by parental concern that fosters dependence and insecurity. Children develop strong self-esteem and independence through praise for their accomplishments and emphasis on their potential abilities.
---- Copyright 2002 by F. A. Davis Company.