We want to help you understand the basic facts of Epilepsy and great resources that can help those living with Epilepsy. The Epilepsy Foundation and CDC.gov/epilepsy provided many of the answers to the questions you read below.
What is Epilepsy?
Epilepsy, sometimes referred to as seizure disorder, is a general term that refers to a tendency to have recurrent seizures.
A seizure is a temporary disturbance in brain function in which groups of nerve cells in the brain signal abnormally and excessively. Nerve cells or neurons normally produce electrical impulses that act on other nerve cells, muscles, or glands to create awareness, thought, sensations, actions, and control of internal body functions. During a seizure, disturbances of nerve cell activity produce symptoms that vary depending on which part (and how much) of the brain is affected. Seizures may produce changes in awareness or sensation, involuntary movements, or other changes in behavior. Usually, a seizure lasts from a few seconds to a few minutes.
See a video provided by Epilepsy.com to learn more details.
What are seizures?
There are many types of seizures. Epileptic seizures are classified into two broad groups:
- Primary generalized seizures (grand mal)—seizures begin with widespread involvement of both sides of the brain, produce loss of consciousness, either briefly or for a longer period of time, and are sub-categorized into several major types:
- Absence – rapid blinking or staring into space
- Atonic – head drops, loss of posture, or sudden collapse
- Tonic-clonic – stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase). Causes the person to lose consciousness, fall to the ground, and have rigidity and muscle jerks lasting up to a few minutes, with an extended period of confusion and fatigue afterward.
- Myoclonic – rapid, brief contractions of bodily muscles, which usually occur at the same time on both sides of the body
- Partial seizures— the most common type of seizure experienced by people with Epilepsy. Seizures involve a smaller, localized area of the brain. Any movement, sensory or emotional symptom can occur as part of a partial seizure, including complex visual or auditory hallucinations.
- Simple – 30 to 60 seconds, no loss of consciousness, sudden jerking, sensory phenomena, transient weakness or loss of sensation
- Complex – 1 to 2 minutes, may have aura (or warning – most typical is sensation in stomach), automatisms (such as lip smacking, picking at clothes, fumbling), unaware of environment, may wander, amnesia for seizure events, mild to moderate confusion during, sleepy after
Some people have seizures that are hardly noticeable to others.
A more detailed explanation of the diagnosis of seizure types and Epilepsy syndromes may be found in a publication of the National Institute of Neurological Disorders and Stroke, Seizures and Epilepsy: Hope Through Research.
See this video to view the effects of an active seizure.
Is having a seizure the same as having Epilepsy?
Not necessarily. In general, seizures do not indicate Epilepsy if they only occur as a result of a temporary medical condition such as a high fever, low blood sugar, alcohol or drug withdrawal, or immediately following a brain concussion. Among people who experience a seizure under such circumstances, without a history of seizures at other times, there is usually no need for ongoing treatment for Epilepsy, only a need to treat the underlying medical condition.
What should I do when someone is having a seizure? First-Aid?
First aid for Epilepsy is simple. The goal is to keep the person safe until the seizure stops naturally by itself. It is important for the public to know how to respond to all seizures, including the most noticeable kind—generalized tonic-clonic seizures, or convulsions.
When providing seizure first aid for generalized tonic-clonic seizures, these are the key things to remember:
- Keep calm and reassure other people who may be nearby.
- Don’t hold the person down or try to stop his movements.
- Time the seizure with your watch.
- Clear the area around the person of anything hard or sharp.
- Loosen ties or anything around the neck that may make breathing difficult.
- Put something flat and soft, like a folded jacket, under the head.
- Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can cause injury.
- Don’t attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
- Stay with the person until the seizure ends naturally.
- Be friendly and reassuring as consciousness returns.
- Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
How does Epilepsy affect the African American community? What are the statistics?
African Americans are learning more about epilepsy- a disease that many in the community are especially prone to developing. Epilepsy affects 350,000 African Americans, and one in 10 people in the U.S. will experience a seizure in his or her lifetime. The disease has a number of causes-including head injuries-and affects people of all ages and walks of life. The Epilepsy Foundation says the best way to deal with epilepsy is to better understand it, yet a number of myths and stigmas still surround the condition. For instance, despite the fact that 24,000 African Americans will be diagnosed with epilepsy this year, a recent survey found children with the disease are more likely to be picked on or bullied at school. Link to more info: Epilepsy and the African American Community
What are the overall Epilepsy and Seizure Statistics?
- Epilepsy and seizures affect almost 3 million Americans of all ages, at an estimated annual cost of $15.5 billion in direct and indirect costs.
- Approximately 200,000 new cases of seizures and epilepsy occur each year.
- Ten percent of the American population will experience a seizure in their lifetime.
- Three percent will develop epilepsy by age 75.
- In 70 percent of new cases, no cause is apparent.
- 50 percent of people with new cases of epilepsy will have generalized onset seizures.
- Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.
Is Epilepsy contagious?
No. You cannot catch epilepsy from someone else and they cannot catch it from you.
What causes Epilepsy?
In about seven out of 10 people with Epilepsy, no cause can be found.
Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works. For example, head injuries or lack of oxygen during birth may damage the delicate electrical system in the brain. Other causes include brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, problems in development of the brain before birth, and infections like meningitis or encephalitis. Epilepsy is often thought of as a condition of childhood, but it can develop at any time of life.
About 30 percent of the 200,000 new cases every year begin in childhood, particularly in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65.
How is Epilepsy diagnosed?
The neurologist’s or epileptologist’s main tool in diagnosing Epilepsy is a careful medical history with as much information as possible about what the seizures looked like and what happened just before they began.
A second major tool is an electroencephalograph (EEG). This is a machine that records brain waves picked up by tiny wires taped to the head. Electrical signals from brain cells are recorded as wavy lines by the machine. Brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has Epilepsy.
Imaging methods such as CT (computerized tomography) or MRI (magnetic resonance imaging) scans may be used to search for any growths, scars, or other physical conditions in the brain that may be causing the seizures. In a few research centers, positron emission tomography (PET) imaging is used to identify areas of the brain which are producing seizures.
How is Epilepsy treated?
- Anti-epileptic drugs (AED) are the main treatments for most people. There are now many drugs available, and a doctor may recommend one or more of these based on several individual patient factors such as the type of Epilepsy, the frequency and severity of the seizures, age, and related health conditions. After starting a medication, close monitoring is required for awhile to assess the effectiveness of the drug as well as possible side effects. Early in treatment, adjustments in dosage are often required. Sometimes, because of continued seizures or significant side effects, it is necessary to change to a different drug. For about two-thirds of people with Epilepsy receiving optimum treatment, drugs are successful in fully controlling seizures. For the remainder, although drugs may have a partial benefit, some seizures continue to occur. For some of these people, other treatment options may be considered.
- Surgery. With certain types of Partial Epilepsy, especially when it can be determined that seizures consistently arise from a single area of the brain (the “seizure focus”), surgery to remove that focus may be effective in stopping future seizures or making them much easier to control with medication. Epilepsy surgery is most commonly performed when a seizure focus is located within the temporal lobe of the brain.
- Marijuana. There has been research proof that marijuana (cannabis) is a successful treatment for Epilepsy & other neurological disorders. A specially developed marijuana treatment has been a cure for children and adults with Epilepsy. It’s not addictive and doesn’t cause a high. Recently, CNN aired Dr. Sanjay Gupta’s – ‘WEED’ Documentary. You may watch the full video on Youtube.
A major downfall is that most people live in states where medical marijuana is not yet a legal prescription and can’t receive what may be their only hopeful treatment.
Other treatments that may be beneficial when medications alone are inadequate and surgery is not possible include:
- Vagus nerve stimulation (VNS Therapy), where an electrical device is implanted to intermittently stimulate a large nerve in the neck. The energy comes from a battery, about the size of a silver dollar, which is surgically implanted under the skin, usually on the chest.
- Ketogenic diet. A high fat, low carb diet.
Can Epilepsy be fatal?
Most people with Epilepsy live a full life span. Nevertheless, the risk of premature death is increased for some, depending on several factors:
- Sometimes Epilepsy is a symptom of a more serious underlying condition such as a stroke or a tumor that carries an increased risk of death.
- People with some types of Epilepsy who continue to have major seizures can experience injuries during a seizure from falling or hurting their head that may occasionally be life-threatening.
- Very prolonged seizures or seizures in rapid succession, a condition called status epilepticus, can also be life-threatening. Status epilepticus can sometimes occur when seizure medication use is stopped suddenly.
Occasionally, people with Epilepsy experience sudden death (SUDEP). These events are not well understood, although they are suspected sometimes to be due to heart rhythm disturbances during a seizure. (Sudden death due to heart rhythm disturbances, also occurs in the general population.) The risk of sudden death is not increased for all types of Epilepsy, but occurs more among people with major seizures—especially generalized tonic-clonic seizures—that are not well controlled.
Do people with epilepsy have problems socially? Does it affect them psychologically?
Epilepsy is a chronic disorder that may affect how you feel about yourself and your relationship with other people, such as family, friends, or co-workers. It does not automatically mean problems although anyone can have emotional difficulties with self-esteem or relationships. People with epilepsy may be embarrassed or fearful about their seizures and they may have to content with the ignorance and fear of other people. Some people work through these issues on their own, and others may need some help from a nurse or a professional counselor to deal with them effectively.
Can people who have Epilepsy get married and have children?
Yes. Sexual relationships are a normal part of healthy living, and people with seizures fall in love and marry just like anyone else. Women with epilepsy get pregnant and most of them have normal, healthy babies. You may experience some specific problems associated with seizure disorders that can interfere with sexual expression and there are some concerns related to seizure control, certain medications and other significant issues that are important to discuss with your doctor before you become pregnant. For more detailed information on these subjects, see Epilepsy and Sexual Relationships and Pregnancy Issues.
Should women who have epilepsy and take anti-epileptic medication never get pregnant or terminate pregnancies? Will the baby will be okay?
For women who have epilepsy, the risk of having a baby with a birth defect is double the risk for women in the general population. Any woman, whether she has epilepsy or not, has a two to three percent chance of having a baby with a birth defect. For women with epilepsy, the risk is four to eight percent. Even so, mothers with seizures have a better than 90 percent chance of having a normal, healthy baby.
The actual cause of the increased risk of malformations has not been determined, but there are three strong possibilities:
- The birth defects are genetically related to whatever causes the epilepsy.
- The birth defects are related to antiepileptic medications needed to control seizures.
- The birth defects occur because the baby may have a genetic susceptibility to possible harmful effects of medications.
Whatever the cause of the malformations, they do not occur often enough to support avoiding or terminating a pregnancy. However, if an eight percent risk of having a child with a malformation is unacceptable to you, it is important that you make the decision that’s best for you.
Stillbirths or miscarriages are also more common for women who have epilepsy, occurring in 1.7 percent of pregnancies, which is about three times the amount in the general population.
There is also a small increase in mortality rates during the first year of life for children of mothers with epilepsy. That risk is only about 0.6 percent, but is higher if the mother’s seizures are not well controlled.
Does Epilepsy keep you from leading a normal life?
Epilepsy does interfere with certain aspects of life for most people who have seizures. Taking medication daily, having regular blood tests, or keeping seizure records is time consuming and a frequent reminder of a chronic disorder. For some people, there are more difficult restrictions, such as inability to drive or make certain career choices.
Seizures are unpredictable and may limit some of your independent activities. Other family members and friends may be concerned and overprotective and, as a result, you may feel dependent. Realistically, some people with epilepsy may have to depend on others to help with certain tasks of daily living.
Although common sense precautions may be necessary, it helps to focus on your abilities, rather than defining yourself by your restrictions. Think of creative ways to solve the problems in your life, such as sharing rides with friends, or learning about public transportation options if you can’t drive. Shopping by phone or with a computer may increase your options for independence and control.
Talk with your family and friends about these issues and your feelings. Insist that you need to be involved in the plans and decisions that affect your life. And don’t hesitate to ask for help if you need it, including professional counseling.
Do you know someone who has Epilepsy?
Epilepsy affects approximately 1% of the world’s population. So, it is very likely you have family members who have Epilepsy. Here is a short list of famous people with Epilepsy:
- Danny Glover, star of many movies including the Lethal Weapon series, has been public about his previous history of Epilepsy. Mr. Glover had epilepsy from age 15 to age 35 & says that he developed “a way of concentrating so that seizures wouldn’t happen,” and he has been seizure free since age 35.
- Florence Griffith Joyner (FloJo) was a world record setting sprinter. She developed seizures in her thirties, possibly due to a cavernous angioma (type of blood vessel malformation). She passed away during her sleep from a grand mal seizure.
- Prince, entertainer & musician, told interviewer Tavis Smiley in 2009 that he was “born epileptic” and “used to have seizures” but was cured by an angel. He sang about his condition in the song ‘The Sacrifice of Victor’.
- Bobby Jones, was an NBA basketball player for 13 years, with four years in the All-Stars. He took medications for Epilepsy during his athletic career.
- Lil Wayne, rapper, told in March 2013 that he was suffering from Epilepsy. He has suffered with the disease since childhood and says that he rarely remembers his seizures.
- Tiki Barber, former American football player, who played running back for the New York Giants, suffered from seizures as a child.
- Ronde Barber, former American football player who played cornerback with the Tampa Bay Buccaneers, suffered from seizures as a child.