Living with Epilepsy
One of the biggest concerns for people with epilepsy is how it affects day to day life. Do they need to restrict their activity and if so, how? Other concerns may arise such as how seizures may affect family life, other relationships, school, work or recreation. Coping with epilepsy will require that people learn how epilepsy may affect them, what their rights and responsibilities are, and how to find support and resources. When safety is an issue, there must be a balance between staying safe and living life. This balance is often found by using common sense, but people will also want to learn about key safety tips and resources.
The challenges of living with epilepsy may be different for children, adolescents, and seniors than for adults, so visit the sections for Children and Teens, Women, Men and Seniors. The EFEPA staff is available to speak with individuals regarding the diverse issues facing people with epilepsy. We can assist you in identifying options for problem solving or resolution with referrals. The Foundation addresses issues of adults and children with epilepsy/seizures, its effect on siblings and other family members. Women who have epilepsy/seizure disorder have specific gender related concerns, as do men; we have resources and information to help you address those issues.
Learn what epilepsy is and what it’s like to live with epilepsy by watching our Faces of Epilepsy video.
What is Epilepsy?
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy. Almost 3 million people in the U.S. have some form of epilepsy. About 200,000 new cases of seizure disorders and epilepsy are diagnosed each year. In the Eastern Pennsylvania region alone there are over 109,000 people living with epilepsy/seizure disorder. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. One in 10 adults will have a seizure sometime during their life.
Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs. Learn more about the different types of seizures here.
Seizure first aid varies for each type of seizure. It is not difficult, but can easily be mishandled. To keep a person who is having a seizure safe and comfortable, take a moment to learn proper first aid for seizures
If seizure lasts more then 5 minutes call 911
People who have had a Complex Partial seizure should be fully conscious and aware before being left on their own. Make sure they know the date, where they are, where they’re going next. Confusion may last longer than the seizure itself and may be hazardous. If full awareness does not return, call for medical assistance.
Most seizures in people with epilepsy are not medical emergencies. They end after a minute or two without harm and usually do not require a trip to the emergency room. But sometimes there are good reasons to call or emergency help. A seizure in someone who does not have epilepsy could be a sign of a serious illness. Other reasons to call an ambulance include:
- A seizure that lasts more than 5 minutes
- No “epilepsy” or “seizure disorder” I.D.
- Slow recovery, a second seizure, or difficulty breathing afterwards
- Pregnancy or other medical diagnosis
- Any signs of injury or sickness
Treatment of Epilepsy
When the doctor has made a diagnosis of seizures or epilepsy, the next step is to select the best form of treatment. If the seizure was caused by an underlying correctable brain condition, surgery may stop seizures. If epilepsy — that is, a continuing tendency to have seizures — is diagnosed, the doctor will usually prescribe regular use of seizure-preventing medications. If drugs are not successful, other methods may be tried, including surgery, a special diet, complementary therapy or vagus nerve stimulation (VNS). The goal of all epilepsy treatment is to prevent further seizures, avoid side effects, and make it possible for people to lead active lifestyles.
There is no cure for epilepsy, yet. Medications do not cure epilepsy in the same sense that penicillin can cure an infection. For many people with epilepsy, however, the medication will prevent seizures as long as they are taken regularly; but, successful drug therapy requires the active cooperation of the patient.
Antiepileptic drugs successfully prevent seizures in at least fifty percent of all patients for substantial periods of time. Another thirty percent enjoy a significant reduction in the number of seizures. Unfortunately, some people continue to have seizures regularly despite taking medication. For them, surgical or, in children, dietary therapy with the ketogenic diet may be helpful. There is also hope that continuing research will produce new drugs and new ways of using them that will eventually give seizure relief to everyone who has epilepsy.
Most epilepsy medicines are taken by mouth. The doctor’s choice of which drug to prescribe depends on what kind of seizure a person is having. People react to medicines in different ways. Some experience side effects, others may not. Some people’s seizures will respond well to a particular drug while someone else will have seizures that continue. It may take some time to find exactly the right dose of the right drug for each person with epilepsy.
Whenever possible, doctors try to prevent seizures with a single medication. This is called monotherapy. However, some people may require polytherapy, the use of more than one medication to achieve seizure control. When selecting a drug, your doctor will consider the type of seizures you have. Not all medications work for all types of seizures.
Like all drugs, epilepsy medicines have side effects. Some are dose-related, and become more likely as the dose increases.