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Epilepsy

The epilepsies are a spectrum of brain disorders ranging from severe, life-threatening and disabling, to ones that are much more benign. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior or sometimes convulsions, muscle spasms, and loss of consciousness. The epilepsies have many possible causes and there are several types of seizures. Anything that disturbs the normal pattern of neuron activity—from illness to brain damage to abnormal brain development—can lead to seizures. Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, changes in important features of brain cells called channels, or some combination of these and other factors. Having a single seizure as the result of a high fever (called febrile seizure) or head injury does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy. A measurement of electrical activity in the brain and brain scans such as magnetic resonance imaging or computed tomography are common diagnostic tests for epilepsy.

Treatment

Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. For about 70 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. Some drugs are more effective for specific types of seizures. An individual with seizures, particularly those that are not easily controlled, may want to see a neurologist specifically trained to treat epilepsy. In some children, special diets may help to control seizures when medications are either not effective or cause serious side effects. 

Prognosis

While epilepsy cannot be cured, for some people the seizures can be controlled with medication, diet, devices, and/or surgery. Most seizures do not cause brain damage, but ongoing uncontrolled seizures may cause brain damage. It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems in conjunction with seizures. Issues may also arise as a result of the stigma attached to having epilepsy, which can led to embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings. For many people with epilepsy, the risk of seizures restricts their independence (some states refuse drivers licenses to people with epilepsy) and recreational activities.Epilepsy can be a life-threatening condition. Some people with epilepsy are at special risk for abnormally prolonged seizures or sudden unexplained death in epilepsy.

Research

Scientists are studying the underlying causes of the epilepsies in children, adults, and the elderly, as well as seizures that occur following brain trauma, stroke, and brain tumors. Ongoing research is focused on developing new model systems that can be used to more quickly screen potential new treatments for the epilepsies. The identification of genes or other genetic information that may influence or cause the epilepsies may allow doctors to prevent the disorders or to predict which treatments will be most beneficial to individuals with specific types of epilepsy. Scientists also continue to study how neurotransmitters interact with brain cells to control nerve firing and how non-neuronal cells in the brain contribute to seizures. Researchers funded by the National Institutes of Health have developed a flexible brain implant that could one day be used to treat seizures. Scientists are continually improving MRI and other brain scans that may assist in diagnosing the epilepsies and identify the source, or focus, of the seizures in the brain. Other areas of study include prevention of seizures and the role of inflammation in epilepsy.  Patients may enter trials of experimental drugs and surgical interventions.More about epilepsy research

View a list of studies currently seeking patients.

View more studies on this condition.

Read additional information from Medline Plus.

Organizations

Family Caregiver Alliance/ National Center on Caregiving

Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.

785 Market St.
Suite 750
San Francisco, CA 94103
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508

Caregiver Action Netork (formerly National Family Caregiver Association)

Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.

1130 Connecticut Avenue, NW
Suite 500
Washington, DC 20036
info@caregiveraction.org
http://caregiveraction.org
Tel: 202-454-3970

Citizens United for Research in Epilepsy (CURE)

Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.

223 W. Erie
Suite 2 SW
Chicago, IL 60654
info@CUREepilepsy.org
http://www.CUREepilepsy.org
Tel: 312-255-1801 800-765-7118
Fax: 312-255-1809

Epilepsy Foundation

National charitable organization dedicated to the welfare of people with epilepsy. Works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. Offers a Legal Defense Program through a fund.

8301 Professional Place East, Suite 200
Landover, MD 20785-7223
postmaster@efa.org
http://www.epilepsy.com
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684

National Council on Patient Information and Education

Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.

200-A Monroe Street
Suite 212
Rockville, MD 20850
ncpie@ncpie.info
http://www.talkaboutrx.org
Tel: 301-340-3940
Fax: 301-340-3944

The Charlie Foundation for Ketogenic Therapies

Raises money for scientific research, education and public awareness of diet therapies for epilepsy. Offers education, programs, and materials for caregivers, dietitians, physicians and hospitals.

515 Ocean Avenue
Suite 602N
Santa Monica, CA 90402
ketoman@aol.com
http://www.charliefoundation.org
Tel: 310-393-2347
Fax: 310-453-4585

Epilepsy Therapy Project

Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website.

P.O. Box 742
10. N. Pendleton Street
Middleburg, VA 20118
info@epilepsytherapyproject.org
http://www.epilepsy.com
Tel: 540-687-8077
Fax: 540-687-8066

Antiepileptic Drug Pregnancy Registry

Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.

Massachusetts General Hospital
121 Innerbelt Road Room 220
Somerville, MA 02143
info@aedpregnancyregistry.org
http://www2.massgeneral.org/aed/
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

55 Kenosia Avenue
Danbury, CT 06810
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

LGS Foundation

LGS Foundation is a not-for- profit organization dedicated to providing information about Lennox-Gastaut Syndrome, a rare and severe form of childhood onset epilepsy, while raising funds for research, programs, and services for individuals living with LGS, and their families.

192 Lexington Avenue
Suite 216
New York, NY 10016
info@lgsfoundation.org
http://lgsfoundation.org/index.html
Tel: 718-374-3800

International RadioSurgery Association

Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement disorders.

2960 Green Street
P.O. Box 5186
Harrisburg, PA 17110
irsa@irsa.org
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809

Dravet Syndrome Foundation

Dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.

P.O. Box 16536
West Haven, CT 06516
http://www.dravetfoundation.org
Tel: 203-392-1950

Hope for Hypothalamic Hamartomas (Hope for HH)

Provides information and support to hypothalamic hamartoma (HH) patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and a cure.

P. O. Box 721
Waddell, AZ 85355
admin@hopeforhh.org
http://hopeforhh.org/

RE Children's Project

National organization devoted to increase awareness regarding Rasmussen's encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure.

79 Christie Hill Road
Darien, CT 06820
swohlberg@rechildrens.com
http://www.rechildrens.org
Tel: 917-971-2977

Intractable Childhood Epilepsy Alliance

The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will lead to a cure for intractable childhood epilepsies.

PO Box 365
6360 Shallowford Road
Lewisville, NC 27023
info@ice-epilepsy.org
http://www.ice-epilepsy.org
Tel: 336-946-1570
Fax: 336-946-1571

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