The MIT Braintrust Center for Neurological Disorder Information


--a disease defined by transient disturbances of nervous system function resulting from abnormal electrical activity of the brain. It is not a specific disease, but rather a group of symptoms that are manifestations of any of a number of conditions that overstimulate nerve cells of the brain. The estimated incidence of epilepsy is 0.5 per cent of the population, making it a relatively common disease. Over 70 per cent of those having epilepsy experience their first attack during childhood or after age 50. The type of seizure varies with age of onset.

 Part 1: General Information
 Part 2: Self-Help
 Part 3: Further Information

I. General Information

Cause.  About 75% of epileptic seizures start in childhood. About 5% of the population will have at least one seizure, not counting the 5% of children who have seizures caused by fevers. The cause can be determined for about 28% of partial epilepsy patients, but in nearly three-quarters of all cases, the cause is unknown. The age of onset can sometimes offer a clue.

Febrile Seizures. Febrile seizures are caused by high fever and usually occur between the ages of three months and five years. They are quite common and occur in about 3% of all children under five years old.  Nearly all febrile seizures are brief and have no long-lasting effect.

Vaccinations. Some controversy arose a few years ago over the possibility that the DTP (diphtheria-tetanus-pertussis) vaccine might trigger epilepsy or other neurologic diseases. In young children, high  fever from a vaccination can, in rare instances, trigger seizures, which are almost always temporary and have no serious consequences. Some experts suggest that children who have neurologic events following their DTP shot may already have a preexisting impairment, such as epilepsy or abnormal brain development, which is revealed but not caused by the vaccine.  Children with epilepsy may be at risk for an outbreak of symptoms two or three days after the vaccination. Such a temporary worsening of their disease does not appear to pose a danger to the child. In general, for infants with suspected neurologic problems, a decision to           vaccinate may be delayed until their neurologic situation is clarified (but no later than their first birthday).

Television-Induced Seizures. Certain patterns of rapidly flashing colors have triggered seizures in hundreds of television watchers, most recently in Japanese children who watched cartoons with rapid fluctuating colors. (It appears that the color variations -- not the light -- caused the seizures.

Other Causes. Seizures in infants and children may also be due to birth defects, difficulties during delivery, infections, poisoning, or head injuries. Melatonin, an herbal remedy available over the counter for sleep disorders, has been found to cause seizures in children who have existing neurologic problems.

    If epilepsy first appears in teenage or adult years, the known major causes tend to be drug or alcohol abuse, withdrawal from certain antianxiety or antidepressant drugs, cancer, disorders of blood vessels, infections, or diabetes. Occupational exposure to certain chemicals can also cause epilepsy. One study found an association between epileptic seizures and herpes simplex virus infections that occur in the central nervous system. More research is needed before any causative role can be proved. In the elderly, epilepsy is often due to degenerative diseases of the brain. Small strokes, called transient ischemic attacks, are often difficult to distinguish                  from mild epileptic seizures, and in fact, a first seizure in adults might be a precursor to stroke.

Head Injuries. Head injuries can cause seizures, with the risk highest in severe head trauma. In such cases, a first seizure related to the injury can occur even years later. People with mild head injuries, which involve loss of consciousness for less than 30 minutes, have only a slight risk that lasts up to five years after the injury.

Genetic Factors. Some forms of epilepsy are inherited. Researchers have recently identified genetic mutations that affect the channels in nerve cells that carry calcium, potassium, and sodium back and forth.  Sodium, potassium, and calcium serve the brain as ions and produce               electric charges that must fire regularly in order for a steady current to pass from one nerve cell to another. If the channels that carry them are genetically damaged, an imbalance occurs that can cause misfire and seizures. One gene, known as Cacng2 or stargazer, impairs ion channels that regulate sodium and calcium and may be responsible for an inherited form of absence epilepsy. Others known as KCNQ2 and KCNQ3 affect potassium channels and are found in families with a rare form of generalized seizures that occur in infancy called benign familial neonatal convulsions.

Brain Tumors. Both cancerous and noncancerous brain tumors can cause seizures in children and adults.

Pseudoepilepsy. In many cases, a seizure can be caused by psychologic stresses, which is known as pseudoepilepsy. It can usually be distinguished from true epilepsy using electroencephalogram (EEG), which measures brain waves.

SYMPTOMS.  The manifestations of epilepsy depend on the area of the brain where the abnormal discharge occurs. Elementary partial seizures, called also simple or focal seizures, result from a localized cortical discharge. The symptoms may be either motor, sensory, or autonomic, or any combination of the three. Complex partial seizures, called also psychomotor or temporal lobe seizures, usually, but not always, originate in the temporal lobe of the brain. There may be an aura before the seizure. As the name implies, there are many different cognitive, affective, and psychomotor symptoms. There is either loss or alteration of consciousness when the seizure begins; after the attack the patient may feel drowsy or confused.
         Absence or petit mal seizures last only a few seconds. There is a sudden onset with no aura or warning and no postictal symptoms. Seizures of this type usually affect children between the ages of 5 and 12 years and may disappear during puberty, but they can continue throughout life. There typically is a twitching about the eyes or mouth, the patient remains sitting or standing, and appears to have had no more than a lapse of attention or a moment of absent-mindedness.
         Grand mal or tonic-clonic seizures usually begin with bilateral jerks of the extremities or focal seizure activity. There is loss of consciousness and both tonic and clonic type convulsions. The patient may be incontinent during the attack and there is danger of tongue biting. In the postictal phase the patient is confused and drowsy.
Atonic or akinetic seizures are characterized by loss of body tone that can produce nodding of the head, weakness of the knees, or total collapse and falling. The patient usually remains conscious during the attack.
    West syndrome affects children within the first year, usually beginning between four and eight months. The infant experiences spasms and developmental delay. Lennox-Gastaut syndrome is a severe form of epilepsy in young children, which causes multiple seizures and some developmental retardation.
    Myoclonic epilepsy is a rare genetic seizure that can be mild and cause brief periods of jerkiness in limited parts of the body, such as the face or trunk, or it may be severe, with grand mal seizures, hearing loss, mental damage, and heart problems.

DIAGNOSIS.  A complete assessment of the patient's status is necessary, including a medical history, physical and neurological examination, and laboratory studies of the blood and spinal fluid. The latter are especially useful in determining whether an infection is the cause of the seizures. A CT scan may demonstrate a causative lesion. The diagnosis is confirmed by ELECTROENCEPHALOGRAM and ECHOENCEPHALOGRAM, which are helpful in locating the site and possibly the cause of the seizures.

TREATMENT. Medical management with anticonvulsant drugs is the preferred therapy for about 95 per cent of patients with epilepsy. Surgical intervention for the remaining 5 per cent involves removal of the portion of brain tissue believed to be responsible for the seizures. Because of the dangers inherent in the surgery, this mode of therapy is reserved for those patients who do not respond to medical management and in whom  the focus of seizure activity is accessible.
         The major antiepileptic drugs are phenytoin, which is usually the drug of choice, phenobarbital, primidone, carbamazepine for complex partial tonic-clonic seizures, and ethosuximide and clonazepam for absence seizures. Valproic acid is also used in the treatment of absence seizures. The choice of drug and calculation of optimal dosage is very difficult and highly individualized.
         All of the anticonvulsant drugs can produce unpleasant side effects. They include gingival hyperplasia, rash, and, in the case of Dilantin, fever and leukopenia. Physical dependence can become a problem in patients taking phenobarbital or primidone, which is largely converted to phenobarbital in the bloodstream. Toxic side effects are also common and include drowsiness, ataxia, nausea, sedation, and dizziness. The untoward effects of anticonvulsant drug therapy require close monitoring of the patient's response to therapy and regulation of dosage as indicated.
In July 1997 FDA approved the first medical device for hard-to-control partial seizures. Cyberonics' NeuroCybernetic Prosthesis (NCP) system or vagus nerve stimulator, approved for adult and adolescent patients, is surgically implanted on the left side of the chest with a lead running under the skin to the vagus nerve on the side of the neck.  The flat, round, thin device, which includes a battery pack and computer chip, is set by a neurologist to discharge in bursts of about 30 seconds each, every five minutes a day, 24 hours a day. The stimulation has the effect of preventing seizures in some people. People generally must continue to take medications as well.
    Another, more debated type of treatment is the ketogenic diet, a special high fat, low carbohydrate diet used mainly in children and sometimes prescribed as a treatment option for those with intractable epilepsy. The diet results in ketosis, a condition in which excessive amounts of ketones (substances chemically akin to acetone) are produced, resulting in an anti-epileptic effect.

PATIENT CARE. Emergency care of the patient having a seizure includes clearing the      immediate area to protect the patient and others, administering 100 per cent oxygen by face mask, and intravenous administration of antiepileptic medication. No one should force an object into the patient's mouth to hold it open (such as a comb, bite block, or wallet), as such objects might obstruct the airway. Do not attempt to restrain the patient, as that may cause harm to both the rescuer and the patient.
        Until a diagnosis of epilepsy is confirmed, observations made before, during, and after each of the seizures can provide important information to the diagnostician. Such data also can help prepare an effective plan of care for managing the seizures once a definitive diagnosis is made.
        Just before a seizure (the preictal stage) the patient may experience an abnormal somatic, visceral, or psychic sensation called an aura. The presence or absence of the aura and its nature (if it is present) should be noted and recorded. If a patient does experience a particular kind of aura just before each seizure, this information can be useful when planning care for prevention of injury. It also is helpful to note what the patient was doing just before the seizure began. If a particular emotional event or environmental or physiologic condition is found to trigger the seizures, the patient might  be able to use this information to avoid or minimize the recurrence of seizures.
        During the interictal stage (while the seizure is occurring) significant data include the time the seizure begins and its duration; where in the body the seizure begins and what parts of the body are involved; whether the head or eyes turn to one side and, if so, to which side; whether there is incontinence of urine or stool, bleeding, or foaming or frothing at the mouth; effects of the seizure on the vital signs; and changes in skin color or profuse perspiration.
        During the postictal period the patient is assessed for lethargy, confusion, impaired      speech, and reports of headache or muscle soreness.
        The successful long-term management of epilepsy requires coordinated effort on the part of the patient, family, and health care professionals. Patient and family education and support are essential components of any plan of care. Epileptic patients must take their prescribed medications on their own and actively participate in the management of their illness. They and those upon whom they are dependent (as in the case of children) must know the nature of the illness, the purpose and expected effects of treatment, the side effects of the drug they are taking and its potential for interaction with other drugs that could inhibit or enhance its anticonvulsant action, and the signs and symptoms of drug intolerance that should be reported to the physician or nurse.
        Education should also include information about possible seizure triggers and ways in    which they might be avoided. Alcohol is especially dangerous for epileptic persons because most antiepileptic drugs are sedatives and cardiopulmonary depressants. The combination of drug and alcohol could cause loss of consciousness or even death.  Moreover, alcohol acts as a seizure trigger in some persons.

RESEARCH: The Epilepsy Foundation is excited about efforts in the area of genetic research.
"It is very likely that we will find that a lot of epilepsy has a genetic basis -- not necessarily that a person has inherited it but that within their physiology there has been a new mutation," he explains. "In July 1998 the British journal Nature published an article based on finding a gene in a mouse model for a common form of epilepsy, absence or petit mal epilepsy. It's called the stargazer gene -- after the mouse's name, Stargazer -- and the study is considered a breakthrough."
    Van Hazerbeke says the new study may lead to a test to determine if an individual has a particular form of epilepsy and that may eventually lead to reversal, prevention, or a cure.

II. Self-help

SUPPORT. It is important that patients with epilepsy wear some form of medical identification. In spite of efforts to educate the general public about the nature of epilepsy and its effects on those who have it, there remains some social stigma attached to epilepsy. Therefore, many patients do not want their friends, classmates, or employers to know they have the disease. Efforts must be made to improve the self-esteem of these people. Local chapters of the Epilepsy Association of America offer programs and opportunities for social interaction and group support to help persons with epilepsy and their families deal with the psychosocial effects of the disease. Information and guidance to a local chapter can be obtained by contacting the Epilepsy Association of America, 111 W. 55th St., New York, NY 10019.

The Epilepsy Foundation of America, 4351 Garden City Dr., Suite 406, Landover, MD 20785, supplies information on all aspects of epilepsy and can refer patients and their families to specialists and clinics in their locality.  View their web site at

The National Society for Epilepsy is located in the UK.  Web site at

The Epilepsy Foundation of Colorado has a web page at

The Epilepsy Foundation of Hawaii page at

The Epilepsy Foundation of the Saint Louis Region web page can be found at

Epilepsy Foundation of Northwest Florida webpage is at

The Society:
The Society helps people with Epilepsy achieve maximum seizure control,to become self-sufficient, and to have their rightful place in the community.

Epilepsy International: The World-Wide Resource Center for Epilepsy Information
In English | En Español

The UAB Epilepsy Center

EFNJ - Epilepsy Foundation of New Jersey

The Epilepsy Foundation of Michigan is the only organization in the state totally dedicated to helping people affected by seizure disorders. The site includes epilepsy information and how to get involved.   

People With Epilepsy, Inc. A self-help website devoted to People with Epilepsy

Johns Hopkins--The Epilepsy Center   

The Texas Tech Epilepsy Program is a multi-disciplinary organization which aims to provide comprehensive diagnostic and therapeutic modalities for epilepsy patients.

The SIU Center for Epilepsy, located in Illinois, provides comprehensive care for persons with all types of epilepsy, through advanced diagnositc techniques, specialized pharmacologic therapy, new investigational drugs and devices, and epilepsy surgery.  Web site is at
The Epilepsy and Brain Mapping Program is a comprehensive healthcare center for treating adult and pediatric epilepsy.

Epilepsy Ontario Home Page:
for Women Living With Epilepsy Career Opportunities for People with Disabilities
Miami Children's Hospital Comprehensive Epilepsy Program is a recognized leader for the diagnosis and medical and surgical treatment of pediatric epilepsy.   

LHSC's Epilepsy Unit is one of the two largest centres for the treatment of epilepsy in Canada. It is renowned throughout the world for its highly qualified team of professionals dedicated to the management of epilepsy.   

Yale Epilepsy Surgery Program
This program is designed to provide comprehensive and innovative clinical care for patients suffering from medically intractable epilepsy.
The Presbyterian Epilepsy Program's goal is to provide comprehensive services for patients with epilepsy.

III. Further Information

Educational resources and treatment information from the Epilepsy Foundation of Victoria (Australia).

Comprehensive resources and information on epilepsy by Washington University

Epilepsy Information and FAQ:
Contains Frequently Asked Questions about Epilepsy
Plain Text Version Translations: Japanese; Portuguese.

Epilepsy Menu:
Articles related to Epilepsy issues.

Comprehensive Epilepsy Center 
Explains how epilepsy causes seizures and lists the different treatment options available. Affiliated with the Cornell Medical Center in New York City.

Canine Epilepsy 

British Epilepsy Association Web Site
The Web Site of the British Epilepsy Association featuring advice, news, reference and support for people with Epilepsy.

Pregnancy and Epilepsy (Full Text Version) 
Mark Yerby, M.D., M.P.H., of the North Pacific Epilepsy Research Center discusses epilepsy, with emphasis on women and pregnancy, infant mortality, and health policy issues

Epilepsy Research, Third Faculty of Medicine, Charles Univ., Praha

Mental Health Net -- Epilepsy Resources
Mental HealthNet's list of epilepsy resources.

Epilepsy: Social Consequences and Economic Aspects   
Explaining Epilepsy

Books for Readers Interested in Epilepsy

Oxfordshire Epilepsy Network 

New Guidelines for Women With Epilepsy  
New guidelines may help women with epilepsy make decisions about contraception, pregnancy and breast-feeding while managing the disease.

EPILEPSY, Surgical Therapy

An Epilepsy Education 
Napoleon, Vincent van Gogh, Danny Glover, and Marion Clignet…

Epilepsy Focus - Fall 1996 - by the Cleveland Clinic Foundation 
Neuroimaging in the Epilepsies: Modern neuroimaging technology now allows noninvasive diagnosis of a wide spectrum of brain lesions which may cause epilepsy.

The Epilepsy Connection

 MIT Braintrust Center for Neurological Disorder Information