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 (commonly called 'the epilepsies') is a group of disorders that occurs as a result of seizures that temporarily impair brain function. Epilepsy is not a 'one size fits all problem'. It can look, feel and act differently in different people. It is much more common than previously thought and is one of the more common neurological problems affecting people of all ages.. 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 decreased 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 spoke out against the ideas that seizures were a curse from the gods and that people with epilepsy held the power of prophecy.
Sadly, false ideas die slowly, and for centuries epilepsy was considered a curse of the gods, or worse. For example, a 1494 handbook on witch-hunting, Malleus Maleficarum, written by two Dominican friars, said that one of the ways of identifying a witch was by the presence of seizures. This book guided a wave of persecution and torture, which caused the deaths of up to 100,000 women thought to be witches.
Misunderstanding continued for many more years. 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 kept separated because seizures were thought to be contagious. In the early 1900s, 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-1800s, 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 pointed out 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. Epilepsy research continues at a vigorous pace, with investigations ranging from how microscopic particles and channels in the cell trigger seizures, to the development of new seizure medicines, and to a better understanding of how epilepsy affects social and intellectual development.
The word "epileptic" should not be used to descrbe someone who has epilepsy, as it defines a person by one trait or problem. 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. However the term seizure disorder means the same thing as epilepsy. A person has epilepsy or a seizure disorder if he or she has had two or more seizures that "come out of the blue" and are not provoked—even if the problem first develops in adulthood or is known to be caused by something like a severe head injury or a tumor.
Epilepsy is a disorder of brain and nerve-cell function that may or may not be associated with damage to brain structures. Brain function can be temporarily disturbed by many things, such as extreme fatigue; the use of sleeping pills, sedatives, or general anesthesia; or high fever or serious illness. "Brain damage" implies that something is permanently wrong with the brain's structure. This kind of damage may occur with severe head injury, cerebral palsy, or stroke, or it may occur long before birth, with malformation or infection. Injuries to the brain are the cause of seizures in some people 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 can make substantial recoveries. Brain damage, like epilepsy, carries a stigma, and some people may unjustly consider brain-injured patients "incompetent."
People with epilepsy usually are not intellectually challenged. Many people mistakenly believe that people with epilepsy are also intellectually or developmentally challenged. In the large majority of situations, 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. Some people, however, may have epilepsy associated with brain injuries that may cause other neurological difficulties that affects their thinking, remembering, or other cognitive abilities. The cognitive problems may be the only problem in most people. Less frequently, some people have other developmental problems that can affect the way they function and live.
The belief that people with epilepsy are violent is an unfortunate image that is both wrong and destructive. People with epilepsy have no greater tendency toward severe irritability and aggressive behaviors than do other people.
Many features of seizures and their immediate aftereffects can be easily misunderstood as "crazy" or "violent" behavior. Unfortunately, police officers and even medical personnel may confuse seizure-related behaviors with other problems. However, these behaviors merely represent semiconscious or confused actions resulting from the seizure. During seizures, some people may not respond to questions, may speak gibberish, undress, repeat a word or phrase, crumple important papers, or may appear frightened and scream. Some are confused immediately after a seizure, and if they are restrained or prevented from moving about, they can become agitated and combative. Some people are able to respond to questions and carry on a conversation fairly well, but several hours later they cannot remember the conversation at all.
Epilepsy is not the same as mental illness and in fact, the majority of people with seizures do not develop mental health problems. Yet recent research is showing that problems with mood, such as anxiety and depression, may be seen more frequently than previously thought. The causes are not always known. In some people, the cause and location of the seizures may affect certain brain areas and contribute to mood problems. In others, side effects of treatments and the challenges of living with epilepsy may affect a person's feelings and behavior. If these problems occur, a variety of treatments are available.
Single tonic-clonic seizures lasting less than 5-10 minutes are not known to cause brain damage or injury. However, there is evidence that more frequent and more prolonged tonic-clonic seizures may in some patients injure the brain. Prolonged or repetitive complex partial seizures (a type of seizure that occurs in clusters without an intervening return of consciousness) also can potentially cause long-lasting impairment of brain function.
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, by the effects of seizure medicines, or both. Usually, however, these problems do not mean that the brain has been damaged by the seizure. There may be a cumulative, negative effect of many tonic-clonic or complex partial seizures on brain function, but this effect appears to be rare.
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 seizure medicines.
Generally, people with epilepsy have seizures and require medication for only a small portion of their lives. About 60 % of people who develop seizures have epilepsy that can be easily controlled and is likely to remit or go away. However, about 25 % may develop difficult to control seizures and likely will require lifelong treatment. More than half of childhood forms of epilepsy are outgrown by adulthood. With many forms of epilepsy in children and adults, when the person has been free of seizures for 1 to 3 years, medications can often be slowly withdrawn and 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, and full life. The person's quality of life, however, may be affected by the frequency and severity of the seizures, the effects of medications, reactions of onlookers to seizures, and other disorders that are often associated with or caused by epilepsy.
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 strong sense of self-esteem in children is important. Many children with long-term, ongoingic illnesses—not only epilepsy but also disorders such as asthma or diabetes—have low self-esteem. This may be 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.
Topic Editor: Orrin Devinsky, M.D.
Last Reviewed: 11/13/08 by Robert Fisher, M.D., Ph.D.
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