Epilepsy is a brain disorder that causes people to have recurring seizures. The seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals. People may have strange sensations and emotions or behave strangely. They may have violent muscle spasms or lose consciousness.
Epilepsy has many possible causes, including illness, brain injury and abnormal brain development. In many cases, the cause is unknown.
Doctors use brain scans and other tests to diagnose epilepsy. It is important to start treatment right away. There is no cure for epilepsy, but medicines can control seizures for most people. When medicines are not working well, surgery or implanted devices such as vagus nerve stimulators may help. Special diets can help some children with epilepsy.
Epilepsy was one of the first brain disorders to be described. It was mentioned in ancient Babylon more than 3,000 years ago. The strange behavior caused by some seizures has contributed through the ages to many superstitions and prejudices. The word epilepsy is derived from the Greek word for "attack." People once thought that those with epilepsy were being visited by demons or gods. However, in 400 B.C., the early physician Hippocrates suggested that epilepsy was a disorder of the brain -- and we now know that he was right.
What is Epilepsy?
More than 2 million people in the United States -- about 1 in 100 -- have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 80 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. However, about 25 to 30 percent of people with epilepsy will continue to experience seizures even with the best available treatment. Doctors call this situation intractable epilepsy. Having a seizure 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.
Epilepsy is not contagious and is not caused by mental illness or mental retardation. Some people with mental retardation may experience seizures, but seizures do not necessarily mean the person has or will develop mental impairment. Many people with epilepsy have normal or above-average intelligence. Famous people who are known or rumored to have had epilepsy include the Russian writer Dostoyevsky, the philosopher Socrates, the military general Napoleon, and the inventor of dynamite, Alfred Nobel, who established the Nobel Prize. Several Olympic medalists and other athletes also have had epilepsy. Seizures sometimes do cause brain damage, particularly if they are severe. However, most seizures do not seem to have a detrimental effect on the brain. Any changes that do occur are usually subtle, and it is often unclear whether these changes are caused by the seizures themselves or by the underlying problem that caused the seizures.
While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizure-free by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.
What Causes Epilepsy?
Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, or some combination of these factors. Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy. One of the most-studied neurotransmitters that plays a role in epilepsy is GABA, or gamma-aminobutyric acid, which is an inhibitory neurotransmitter. Research on GABA has led to drugs that alter the amount of this neurotransmitter in the brain or change how the brain responds to it. Researchers also are studying excitatory neurotransmitters such as glutamate.
In some cases, the brain's attempts to repair itself after a head injury, stroke, or other problem may inadvertently generate abnormal nerve connections that lead to epilepsy. Abnormalities in brain wiring that occur during brain development also may disturb neuronal activity and lead to epilepsy.
Research has shown that the cell membrane that surrounds each neuron plays an important role in epilepsy. Cell membranes are crucial for a neuron to generate electrical impulses. For this reason, researchers are studying details of the membrane structure, how molecules move in and out of membranes, and how the cell nourishes and repairs the membrane. A disruption in any of these processes may lead to epilepsy. Studies in animals have shown that, because the brain continually adapts to changes in stimuli, a small change in neuronal activity, if repeated, may eventually lead to full-blown epilepsy. Researchers are investigating whether this phenomenon, called kindling, may also occur in humans.
In some cases, epilepsy may result from changes in non-neuronal brain cells called glia. These cells regulate concentrations of chemicals in the brain that can affect neuronal signaling.
About half of all seizures have no known cause. However, in other cases, the seizures are clearly linked to infection, trauma, or other identifiable problems.
Several types of epilepsy have now been linked to defective genes for ion channels, the "gates" that control the flow of ions in and out of cells and regulate neuron signaling. Another gene, which is missing in people with progressive myoclonus epilepsy, codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins. Another gene, which is altered in a severe form of epilepsy called LaFora's disease, has been linked to a gene that helps to break down carbohydrates.
While abnormal genes sometimes cause epilepsy, they also may influence the disorder in subtler ways. For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people. Genes also may control other aspects of the body's response to medications and each person's susceptibility to seizures, or seizure threshold. Abnormalities in the genes that control neuronal migration -- a critical step in brain development -- can lead to areas of misplaced or abnormally formed neurons, or dysplasia, in the brain that can cause epilepsy. In some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder. These people may have a newly developed abnormality, or mutation, in an epilepsy-related gene.
Epilepsy is associated with a variety of developmental and metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate dependency, tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of symptoms commonly found in people with these disorders.
Prenatal Injury and Developmental Problems
Seizures are often triggered by factors such as lack of sleep, alcohol consumption, stress, or hormonal changes associated with the menstrual cycle. These seizure triggers do not cause epilepsy but can provoke first seizures or cause breakthrough seizures in people who otherwise experience good seizure control with their medication. Sleep deprivation in particular is a universal and powerful trigger of seizures. For this reason, people with epilepsy should make sure to get enough sleep and should try to stay on a regular sleep schedule as much as possible. For some people, light flashing at a certain speed or the flicker of a computer monitor can trigger a seizure; this problem is called photosensitive epilepsy. Smoking cigarettes also can trigger seizures. The nicotine in cigarettes acts on receptors for the excitatory neurotransmitter acetylcholine in the brain, which increases neuronal firing. Seizures are not triggered by sexual activity except in very rare instances.
What Are the Different Kinds of Seizures?
In a simple focal seizure, the person will remain conscious but experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real.
In a complex focal seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex focal seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are called automatisms. More complicated actions, which may seem purposeful, can also occur involuntarily. Patients may also continue activities they started before the seizure began, such as washing dishes in a repetitive, unproductive fashion. These seizures usually last just a few seconds.
Some people with focal seizures, especially complex focal seizures, may experience auras -- unusual sensations that warn of an impending seizure. These auras are actually simple focal seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tend to be stereotyped, or similar every time.
The symptoms of focal seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex focal seizure may be misdiagnosed as migraine headaches, which also may cause a dreamlike state. The strange behavior and sensations caused by focal seizures also can be istaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by an experienced physician to tell the difference between epilepsy and other disorders.
There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizures cause repeated jerking movements of muscles on both sides of the body. Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs. Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may drop his or her head involuntarily. Tonic-clonic seizures cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures.
Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern.
Society's lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person's control. In some cases, this has led to the affected person being arrested or admitted to a psychiatric hospital. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.
What Are the
Different Kinds of
People with absence epilepsy have repeated absence seizures that cause momentary lapses of consciousness. These seizures almost always begin in childhood or adolescence, and they tend to run in families, suggesting that they may be at least partially due to a defective gene or genes. Some people with absence seizures have purposeless movements during their seizures, such as a jerking arm or rapidly blinking eyes. Others have no noticeable symptoms except for brief times when they are "out of it." Immediately after a seizure, the person can resume whatever he or she was doing. However, these seizures may occur so frequently that the person cannot concentrate in school or other situations. Childhood absence epilepsy usually stops when the child reaches puberty. Absence seizures usually have no lasting effect on intelligence or other brain functions.
Temporal lobe epilepsy, or TLE, is the most common epilepsy syndrome with focal seizures. These seizures are often associated with auras. TLE often begins in childhood. Research has shown that repeated temporal lobe seizures can cause a brain structure called the hippocampus to shrink over time. The hippocampus is important for memory and learning. While it may take years of temporal lobe seizures for measurable hippocampal damage to occur, this finding underlines the need to treat TLE early and as effectively as possible.
Neocortical epilepsy is characterized by seizures that originate from the brain's cortex, or outer layer. The seizures can be either focal or generalized. They may include strange sensations, visual hallucinations, emotional changes, muscle spasms, convulsions, and a variety of other symptoms, depending on where in the brain the seizures originate.
There are many other types of epilepsy, each with its own characteristic set of symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussen's encephalitis, begin in childhood. Children with Lennox-Gastaut syndrome have severe epilepsy with several different types of seizures, including atonic seizures, which cause sudden falls and are also called drop attacks. This severe form of epilepsy can be very difficult to treat effectively. Rasmussen's encephalitis is a progressive type of epilepsy in which half of the brain shows continual inflammation. It sometimes is treated with a radical surgical procedure called hemispherectomy (see the section on Surgery). Some childhood epilepsy syndromes, such as childhood absence epilepsy, tend to go into remission or stop entirely during adolescence, whereas other syndromes such as juvenile myoclonic epilepsy and Lennox-Gastaut syndrome are usually present for life once they develop. Seizure syndromes do not always appear in childhood, however.
Epilepsy syndromes that are easily treated, do not seem to impair cognitive functions or development, and usually stop spontaneously are often described as benign. Benign epilepsy syndromes include benign infantile encephalopathy and benign neonatal convulsions. Other syndromes, such as early myoclonic encephalopathy, include neurological and developmental problems. However, these problems may be caused by underlying neurodegenerative processes rather than by the seizures. Epilepsy syndromes in which the seizures and/or the person's cognitive abilities get worse over time are called progressive epilepsy.
Several types of epilepsy begin in infancy. The most common type of infantile epilepsy is infantile spasms, clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out. Anticonvulsant drugs often do not work for infantile spasms, but the seizures can be treated with ACTH (adrenocorticotropic hormone) or prednisone.
When Are Seizures Not Epilepsy?
When someone has experienced a first seizure, the doctor will usually order an electroencephalogram, or EEG, to determine what type of seizure the person may have had and if there are any detectable abnormalities in the person's brain waves. Thedoctor also may order brain scans to identify abnormalities that may be visible in the brain. These tests may help the doctor decide whether or not to treat the person with antiepileptic drugs. In some cases, drug treatment after the first seizure may help prevent future seizures and epilepsy. However, the drugs also can cause detrimental side effects, so doctors prescribe them only when they feel the benefits outweigh the risks. Evidence suggests that it may be beneficial to begin anticonvulsant medication once a person has had a second seizure, as the chance of future seizures increases significantly after this occurs.
Researchers have now identified several different genes that influence the risk of febrile seizures in certain families. Studying these genes may lead to new understanding of how febrile seizures occur and perhaps point to ways of preventing them.
Other nonepileptic events may be caused by narcolepsy, Tourette syndrome, cardiac arrythmia, and other medical conditions with symptoms that resemble seizures. Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology may improve diagnosis of nonepileptic events in the future.
How is Epilepsy Diagnosed?
Video monitoring is often used in conjunction with EEG to determine the nature of a person's seizures. It also can be used in some cases to rule out other disorders such as cardiac arrythmia or narcolepsy that may look like epilepsy.
In some cases, doctors may use an experimental type of brain scan called a magnetoencephalogram, or MEG. MEG detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG. Doctors also are experimenting with brain scans called magnetic resonance spectroscopy (MRS) that can detect abnormalities in the brain's biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue.
Developmental, Neurological, and Behavioral Tests
Can Epilepsy be Prevented?
How can Epilepsy be Treated?
Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.
Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. Research suggests that medication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.
By far the most common approach to treating epilepsy is to prescribe antiepileptic drugs. The first effective antiepileptic drugs were bromides, introduced by an English physician named Sir Charles Locock in 1857. He noticed that bromides had a sedative effect and seemed to reduce seizures in some patients. More than 20 different antiepileptic drugs are now on the market, all with different benefits and side effects. The choice of which drug to prescribe, and at what dosage, depends on many different factors, including the type of seizures a person has, the person’s lifestyle and age, how frequently the seizures occur, and, for a woman, the likelihood that she will become pregnant. People with epilepsy should follow their doctor’s advice and share any concerns they may have regarding their medication.
Doctors seeing a patient with newly developed epilepsy often prescribe carbamazepine, valproate, lamotrigine, oxcarbazepine, or phenytoin first, unless the epilepsy is a type that is known to require a different kind of treatment. For absence seizures, ethosuximide is often the primary treatment. Other commonly prescribed drugs include clonazepam, phenobarbital, and primidone. Some relatively new epilepsy drugs include tiagabine, gabapentin, topiramate, levetiracetam, and felbamate. Other drugs are used in combination with one of the standard drugs or for intractable seizures that do not respond to other medications. A few drugs, such as fosphenytoin, are approved for use only in hospital settings to treat specific problems such as status epilepticus (see section, “Are There Special Risks Associated With Epilepsy?” ). For people with stereotyped recurrent severe seizures that can be easily recognized by the person’s family, the drug diazepam is now available as a gel that can be administered rectally by a family member. This method of drug delivery may be able to stop prolonged or repeated seizures before they develop into status epilepticus.
For most people with epilepsy, seizures can be controlled with just one drug at the optimal dosage. Combining medications usually amplifies side effects such as fatigue and decreased appetite, so doctors usually prescribe monotherapy, or the use of just one drug, whenever possible. Combinations of drugs are sometimes prescribed if monotherapy fails to effectively control a patient’s seizures.
The number of times a person needs to take medication each day is usually determined by the drug’s half-life, or the time it takes for half the drug dose to be metabolized or broken down into other substances in the body. Some drugs, such as phenytoin and phenobarbital, only need to be taken once a day, while others such as valproate must be taken two or three times a day.
Most side effects of antiepileptic drugs are relatively minor, such as fatigue, dizziness, or weight gain. However, severe and life-threatening side effects such as allergic reactions can occur. Epilepsy medication also may predispose people to developing depression or psychoses. People with epilepsy should consult a doctor immediately if they develop any kind of rash while on medication, or if they find themselves depressed or otherwise unable to think in a rational manner. Other danger signs that should be discussed with a doctor immediately are extreme fatigue, staggering or other movement problems, and slurring of words. People with epilepsy should be aware that their epilepsy medication can interact with many other drugs in potentially harmful ways. For this reason, people with epilepsy should always tell doctors who treat them which medications they are taking. Women also should know that some antiepileptic drugs can interfere with the effectiveness of oral contraceptives, and they should discuss this possibility with their doctors.
Since people can become more sensitive to medications as they age, they may need to have their blood levels of medication checked occasionally to see if the dose needs to be adjusted. The effects of a particular medication also sometimes wear off over time, leading to an increase in seizures if the dose is not adjusted. People should know that some citrus fruit, in particular grapefruit juice, may interfere with breakdown of many drugs. This can cause too much of the drug to build up in their bodies, often worsening the side effects.
People taking epilepsy medication should be sure to check with their doctor and/or seek a second medical opinion if their medication does not appear to be working or if it causes unexpected side effects.
Tailoring the dosage of antiepileptic drugs
Generic versions are available for many antiepileptic drugs. The chemicals in generic drugs are exactly the same as in the brand-name drugs, but they may be absorbed or processed differently in the body because of the way they are prepared. Therefore, patients should always check with their doctors before switching to a generic version of their medication.
The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.
A 1990 National Institutes of Health consensus conference on surgery for epilepsy concluded that there are three broad categories of epilepsy that can be treated successfully with surgery. These include focal seizures, seizures that begin as focal seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy with infantile hemiplegia (such as Rasmussen's encephalitis). Doctors generally recommend surgery only after patients have tried two or three different medications without success, or if there is an identifiable brain lesion--a damaged or dysfunctional area--believed to cause the seizures.
A study published in 2000 compared surgery to an additional year of treatment with antiepileptic drugs in people with longstanding temporal lobe epilepsy. The results showed that 64 percent of patients receiving surgery became seizure-free, compared to 8 percent of those who continued with medication only. Because of this study and other evidence, the American Academy of Neurology (AAN) now recommends surgery for TLE when antiepileptic drugs are not effective. However, the study and the AAN guidelines do not provide guidance on how long seizures should occur, how severe they should be, or how many drugs should be tried before surgery is considered. A nationwide study is now underway to determine how soon surgery for TLE should be performed.
If a person is considered a good candidate for surgery and has seizures that cannot be controlled with available medication, experts generally agree that surgery should be performed as early as possible. It can be difficult for a person who has had years of seizures to fully re-adapt to a seizure-free life if the surgery is successful. The person may never have had an opportunity to develop independence, and he or she may have had difficulties with school and work that could have been avoided with earlier treatment. Surgery should always be performed with support from rehabilitation specialists and counselors who can help the person deal with the many psychological, social, and employment issues he or she may face.
While surgery can significantly reduce or even halt seizures for some people, it is important to remember that any kind of surgery carries some amount of risk (usually small). Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes, even in people who are excellent candidates for surgery. Patients should ask their surgeon about his or her experience, success rates, and complication rates with the procedure they are considering.
Even when surgery completely ends a person's seizures, it is important to continue taking seizure medication for some time to give the brain time to re-adapt. Doctors generally recommend medication for 2 years after a successful operation to avoid new seizures.
Surgery to treat underlying conditions
Surgery to remove a
Multiple subpial transection
Hemispherectomy and hemispherotomy
Several new devices may become available for epilepsy in the future. Researchers are studying whether transcranial magnetic stimulation (TMS), a procedure which uses a strong magnet held outside the head to influence brain activity, may reduce seizures. They also hope to develop implantable devices that can deliver drugs to specific parts of the brain.
Researchers are not sure how ketosis inhibits seizures. One study showed that a byproduct of ketosis called beta-hydroxybutyrate (BHB) inhibits seizures in animals. If BHB also works in humans, researchers may eventually be able to develop drugs that mimic the seizure-inhibiting effects of the ketogenic diet.
Other Treatment Strategies
How Does Epilepsy
Affect Daily Life?
People with epilepsy have an increased risk of poor self-esteem, depression, and suicide. These problems may be a reaction to a lack of understanding or discomfort about epilepsy that may result in cruelty or avoidance by other people. Many people with epilepsy also live with an ever-present fear that they will have another seizure.
Driving and Recreation
The risk of seizures also restricts people's recreational choices. For instance, people with epilepsy should not participate in sports such as skydiving or motor racing where a moment's inattention could lead to injury. Other activities, such as swimming and sailing, should be done only with precautions and/or supervision. However, jogging, football, and many other sports are reasonably safe for a person with epilepsy. Studies to date have not shown any increase in seizures due to sports, although these studies have not focused on any activity in particular. There is some evidence that regular exercise may even improve seizure control in some people. Sports are often such a positive factor in life that it is best for the person to participate, although the person with epilepsy and the coach or other leader should take appropriate safety precautions. It is important to take steps to avoid potential sports-related problems such as dehydration, overexertion, and hypoglycemia, as these problems can increase the risk of seizures.
Education and Employment
Pregnancy and Motherhood
There are several precautions women can take before and during pregnancy to reduce the risks associated with pregnancy and delivery. Women who are thinking about becoming pregnant should talk with their doctors to learn any special risks associated with their epilepsy and the medications they may be taking. Some seizure medications, particularly valproate, trimethidone, and phenytoin, are known to increase the risk of having a child with birth defects such as cleft palate, heart problems, or finger and toe defects. For this reason, a woman's doctor may advise switching to other medications during pregnancy. Whenever possible, a woman should allow her doctor enough time to properly change medications, including phasing in the new medications and checking to determine when blood levels are stabilized, before she tries to become pregnant. Women should also begin prenatal vitamin supplements -- especially with folic acid, which may reduce the risk of some birth defects -- well before pregnancy. Women who discover that they are pregnant but have not already spoken with their doctor about ways to reduce the risks should do so as soon as possible. However, they should continue taking seizure medication as prescribed until that time to avoid preventable seizures. Seizures during pregnancy can harm the developing baby or lead to miscarriage, particularly if the seizures are severe. Nevertheless, many women who have seizures during pregnancy have normal, healthy babies.
Women with epilepsy sometimes experience a change in their seizure frequency during pregnancy, even if they do not change medications. About 25 to 40 percent of women have an increase in their seizure frequency while they are pregnant, while other women may have fewer seizures during pregnancy. The frequency of seizures during pregnancy may be influenced by a variety of factors, including the woman's increased blood volume during pregnancy, which can dilute the effect of medication. Women should have their blood levels of seizure medications monitored closely during and after pregnancy, and the medication dosage should be adjusted accordingly.
Pregnant women with epilepsy should take prenatal vitamins and get plenty of sleep to avoid seizures caused by sleep deprivation. They also should take vitamin K supplements after 34 weeks of pregnancy to reduce the risk of a blood-clotting disorder in infants called neonatal coagulopathy that can result from fetal exposure to epilepsy medications. Finally, they should get good prenatal care, avoid tobacco, caffeine, alcohol, and illegal drugs, and try to avoid stress.
Labor and delivery usually proceed normally for women with epilepsy, although there is a slightly increased risk of hemorrhage, eclampsia, premature labor, and cesarean section. Doctors can administer antiepileptic drugs intravenously and monitor blood levels of anticonvulsant medication during labor to reduce the risk that the labor will trigger a seizure. Babies sometimes have symptoms of withdrawal from the mother's seizure medication after they are born, but these problems wear off in a few weeks or months and usually do not cause serious or long-term effects. A mother's blood levels of anticonvulsant medication should be checked frequently after delivery as medication often needs to be decreased.
Epilepsy medications need not influence a woman's decision about breast-feeding her baby. Only minor amounts of epilepsy medications are secreted in breast milk, usually not enough to harm the baby and much less than the baby was exposed to in the womb. On rare occasions, the baby may become excessively drowsy or feed poorly, and these problems should be closely monitored. However, experts believe the benefits of breast-feeding outweigh the risks except in rare circumstances.
To increase doctors' understanding of how different epilepsy medications affect pregnancy and the chances of having a healthy baby, Massachusetts General Hospital has begun a nationwide registry for women who take antiepileptic drugs while pregnant. Women who enroll in this program are given educational materials on pre-conception planning and perinatal care and are asked to provide information about the health of their children (this information is kept confidential). Women and physicians can contact this registry by calling 1-888-233-2334 or 617-726-1742 (fax: 617-724-8307).
Women with epilepsy should be aware that some epilepsy medications can interfere with the effectiveness of oral contraceptives. Women who wish to use oral contraceptives to prevent pregnancy should discuss this with their doctors, who may be able to prescribe a different kind of antiepileptic medication or suggest other ways of avoiding an unplanned pregnancy.
Are There Special
Risks Associated With
Status epilepticus affects about 195,000 people each year in the United States and results in about 42,000 deaths. While people with epilepsy are at an increased risk for status epilepticus, about 60 percent of people who develop this condition have no previous seizure history. These cases often result from tumors, trauma, or other problems that affect the brain and may themselves be life-threatening.
While most seizures do not require emergency medical treatment, someone with a prolonged seizure lasting more than 5 minutes may be in status epilepticus and should be taken to an emergency room immediately. It is important to treat a person with status epilepticus as soon as possible. One study showed that 80 percent of people in status epilepticus who received medication within 30 minutes of seizure onset eventually stopped having seizures, whereas only 40 percent recovered if 2 hours had passed before they received medication. Doctors in a hospital setting can treat status epilepticus with several different drugs and can undertake emergency life-saving measures, such as administering oxygen, if necessary.
People in status epilepticus do not always have severe convulsive seizures. Instead, they may have repeated or prolonged nonconvulsive seizures. This type of status epilepticus may appear as a sustained episode of confusion or agitation in someone who does not ordinarily have that kind of mental impairment. While this type of episode may not seem as severe as convulsive status epilepticus, it should still be treated as an emergency.
Sudden Unexplained Death
What Research Is Being Done on Epilepsy?
The NINDS's Anticonvulsant Screening Program (ASP) studies potential new therapies with the goal of enhancing treatment for patients with epilepsy. Since it began in 1975, more than 390 public-private partnerships have been created. These partnerships have resulted in state-of-the-art evaluations of more than 25,000 compounds for their potential as antiepileptic drugs. This government-sponsored effort has contributed to the development of five drugs that are now approved for use in the United States. It has also aided in the discovery and profiling of six new compounds currently in various stages of clinical development. Besides testing for safer, more efficacious therapies, the Program is developing and validating new models that may one day find therapies that intervene in the disease process itself as well as models of resistant or refractory epilepsy.
Scientists continue to study how excitatory and inhibitory neurotransmitters interact with brain cells to control nerve firing. They can apply different chemicals to cultures of neurons in laboratory dishes to study how those chemicals influence neuronal activity. They also are studying how glia and other non-neuronal cells in the brain contribute to seizures. This research may lead to new drugs and other new ways of treating seizures.
Researchers also are working to identify genes that may influence epilepsy in some way. Identifying these genes can reveal the underlying chemical processes that influence epilepsy and point to new ways of preventing or treating this disorder. Researchers also can study rats and mice that have missing or abnormal copies of certain genes to determine how these genes affect normal brain development and resistance to damage from disease and other environmental factors. In the future, researchers may be able to use panels of gene fragments, called "gene chips," to determine each person's genetic makeup. This information may allow doctors to prevent epilepsy or to predict which treatments will be most beneficial.
Doctors are now experimenting with several new types of therapies for epilepsy. In one preliminary clinical trial, doctors have begun transplanting fetal pig neurons that produce GABA into the brains of patients to learn whether the cell transplants can help control seizures. Preliminary research suggests that stem cell transplants also may prove beneficial for treating epilepsy. Research showing that the brain undergoes subtle changes prior to a seizure has led to a prototype device that may be able to predict seizures up to 3 minutes before they begin. If this device works, it could greatly reduce the risk of injury from seizures by allowing people to move to a safe area before their seizures start. This type of device also may be hooked up to a treatment pump or other device that will automatically deliver an antiepileptic drug or an electric impulse to forestall the seizures.
Researchers are continually improving MRI and other brain scans. Pre-surgical brain imaging can guide doctors to abnormal brain tissue and away from essential parts of the brain. Researchers also are using brain scans such as magnetoencephalograms (MEG) and magnetic resonance spectroscopy (MRS) to identify and study subtle problems in the brain that cannot otherwise be detected. Their findings may lead to a better understanding of epilepsy and how it can be treated.
How Can I Help
Research on Epilepsy?
People with epilepsy can help researchers test new medications, surgical techniques, and other treatments by enrolling in clinical trials. Information on clinical trials can be obtained from the NINDS as well as many private pharmaceutical and biotech companies, universities, and other organizations. A person who wishes to participate in a clinical trial must ask his or her regular physician to refer him or her to the doctor in charge of that trial and to forward all necessary medical records. While experimental therapies may benefit those who participate in clinical trials, patients and their families should remember that all clinical trials also involve some risks. Therapies being tested in clinical trials may not work, and in some cases doctors may not yet be sure that the therapies are safe. Patients should be certain they understand the risks before agreeing to participate in a clinical trial.
Patients and their families also can help epilepsy research by donating their brain to a brain bank after death. Brain banks supply researchers with tissue they can use to study epilepsy and other disorders. Below are some brain banks that accept tissue from patients with epilepsy:
Tissue Bank for
University of Maryland
655 West Baltimore Street, Room 10-035 BRB
Baltimore, MD 21201-1559
Brain and Tissue Bank for Developmental Disorders
University of Miami
Department of Pathology, R-5
Papanicolaou Building, Room 410
Miami, FL 33136
Brain Endowment Bank
University of Miami
1501 NW Ninth Avenue, Suite #4013
Miami, FL 33136
and Spinal Fluid
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Boulevard
Los Angeles, CA 90073
What To Do If You See Someone Having a Seizure
- Roll the person on his or her side to prevent choking on any fluids or vomit.
- Cushion the person's head.
- Loosen any tight clothing around the neck.
- Keep the person's airway open. If necessary, grip the person's jaw gently and tilt his or her head back.
- Do NOT restrict the person from moving unless he or she is in danger.
- Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Contrary to widespread belief, people cannot swallow their tongues during a seizure or any other time.
- Remove any sharp or solid objects that the person might hit during the seizure.
- Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
- Stay with the person until the seizure ends.
Call 911 if:
The person is pregnant or has diabetes.
The seizure happened in water.
The seizure lasts longer than 5 minutes.
The person does not begin breathing again or does not return to consciousness after the seizure stops.
Another seizure starts before the person regains consciousness.
The person injures himself or herself during the seizure.
This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn't feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
If you see someone having a non-convulsive seizure, remember that the person's behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines:
Remove any dangerous objects from the area around the person or in his or her path.
Don't try to stop the person from wandering unless he or she is in danger.
Don't shake the person or shout.
Stay with the person until he or she is completely alert.
Information Resources: March 2004
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
P.O. Box 5801
Bethesda, MD 20824
Information also is available from the following organizations:
730 N. Franklin Street
Chicago, IL 60654
Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.
8301 Professional Place
Landover, MD 20785-7223
Tel: 301-459-3700 800-EFA-1000 (332-1000)
National charitable organization dedicated to the welfare of people with epilepsy. Works for children and adults affected by seizures through education, advocacy, services, and research towards a cure. Offers a Legal Defense Program through a fund.
257 Park Avenue South
New York, NY 10010
Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.
7 East 85th Street
New York, NY 10028
Tel: 212-665-PACE (7223)
Non-profit research resource that provides information and support to families of children with epilepsy.
180 Montgomery Street
San Francisco, CA 94104
Tel: 415-434-3388 800-445-8106
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.
4915 St. Elmo Avenue
Bethesda, MD 20814-6082
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.
10400 Connecticut Avenue
Kensington, MD 20895-3944
Tel: 301-942-6430 800-896-3650
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.
Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
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.
3002 N. Second Street
Harrisburg, PA 17110
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.
1223 Wilshire Blvd.
Santa Monica, CA 90403
Non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians.
11921 Freedom Drive
Reston, VA 20190
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.
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA 02129-2000
Tel: 888-AED-AED4 (233-2334)
Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.
- absence epilepsy
- epilepsy in which the person has repeated absence seizures.
- absence seizures
- the type of seizure seen in absence epilepsy, in which the person experiences a momentary loss in consciousness. The person may stare into space for several seconds and may have some twitching or jerking of muscles.
- ACTH (adrenocorticotropic hormone)
- a substance that can be used to treat infantile spasms.
- atonic seizures
- seizures which cause a sudden loss of muscle tone, also called drop attacks.
- unusual sensations or movements that warn of an impending, more severe seizure. These auras are actually simple focal seizures in which the person maintains consciousness.
- strange, repetitious behaviors that occur during a seizure. Automatisms may include blinks, twitches, mouth movements, or even walking in a circle.
- benign infantile encephalopathy
- a type of epilepsy syndrome that occurs in infants. It is considered benign because it does not seem to impair cognitive functions or development.
- benign neonatal convulsions
- a type of epilepsy syndrome in newborns that does not seem to impair cognitive functions or development.
- a strategy in which individuals learn to control their own brain waves or other normally involuntary functions. This is an experimental treatment for epilepsy.
- celiac disease
- an intolerance to wheat gluten in foods that can lead to seizures and other symptoms.
- clonic seizures
- seizures that cause repeated jerking movements of muscles on both sides of the body.
- complex focal seizures
- seizures in which only one part of the brain is affected, but the person has a change in or loss of consciousness.
- sudden contractions of the muscles that may be caused by seizures.
- corpus callosotomy
- surgery that severs the corpus callosum, or network of neural connections between the right and left hemispheres of the brain.
- CT (computed tomography)
- a type of brain scan that reveals the structure of the brain.
- drop attacks
- seizures that cause sudden falls; another term for atonic seizures.
- areas of misplaced or abnormally formed neurons in the brain.
- early myoclonic encephalopathy
- a type of epilepsy syndrome that usually includes neurological and developmental problems.
- a life-threatening condition that can develop in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures.
- electroencephalogram (EEG)
- a test which uses electrodes to record brain waves.
- epilepsy syndromes
- disorders with a specific set of symptoms that include epilepsy.
- excitatory neurotransmitters
- nerve signaling chemicals that increase activity in neurons.
- febrile seizures
- seizures in infants and children that are associated with a high fever.
- focal seizures
- seizures that occur in just one part of the brain.
- frontal lobe epilepsy
- a type of epilepsy that originates in the frontal lobe of the brain. It usually involves a cluster of short seizures with a sudden onset and termination.
- functional MRI (functional magnetic resonance imaging)
- a type of brain scan that can be used to monitor the brain's activity and detect abnormalities in how it works.
- GABA (gamma-aminobutyric acid)
- an inhibitory neurotransmitter that plays a role in some types of epilepsy.
- generalized seizures
- seizures that result from abnormal neuronal activity in many parts of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms.
- cells that regulate concentrations of chemicals that affect neuron signaling and perform other important functions in the brain.
- an excitatory neurotransmitter that may play a role in some types of epilepsy.
- grand mal seizures
- an older term for tonic-clonic seizures.
- the right and left halves of the brain.
- a brain structure important for memory and learning.
- idiopathic epilepsy
- epilepsy with an unknown cause.
- infantile spasms
- clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out.
- inhibitory neurotransmitters
- nerve signaling chemicals that decrease activity in neurons.
- about 20 percent of people with epilepsy will continue to experience seizures even with the best available treatment.
- ion channels
- molecular "gates" that control the flow of ions in and out of cells and regulate neuron signaling.
- juvenile myoclonic epilepsy
- a type of epilepsy characterized by sudden myoclonic jerks that usually begins in childhood or adolescence.
- ketogenic diet
- a strict diet rich in fats and low in carbohydrates that causes the body to break down fats instead of carbohydrates to survive.
- a phenomenon in which a small change in neuronal activity, if it is repeated, can eventually lead to full-blown epilepsy.
- LaFora's disease
- a severe, progressive form of epilepsy that begins in childhood and has been linked to a gene that helps to break down carbohydrates.
- Lennox-Gastaut syndrome
- a type of epilepsy that begins in childhood and usually causes several different kinds of seizures, including absence seizures.
- damaged or dysfunctional part of the brain or other parts of the body.
- removal of a specific brain lesion.
- removal of a lobe of the brain.
- magnetic resonance spectroscopy (MRS)
- a type of brain scan that can detect abnormalities in the brain's biochemical processes.
- magnetoencephalogram (MEG)
- a type of brain scan that detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions.
- broken down or otherwise transformed by the body.
- treatment with only one antiepileptic drug.
- MRI (magnetic resonance imaging)
- a type of brain scan that reveals the structure of the brain.
- multiple sub-pial transection
- a type of operation in which surgeons make a series of cuts in the brain that are designed to prevent seizures from spreading into other parts of the brain while leaving the person's normal abilities intact.
- an abnormality in a gene.
- myoclonic seizures
- seizures that cause sudden jerks or twitches, especially in the upper body, arms, or legs.
- near-infrared spectroscopy
- a technique that can detect oxygen levels in brain tissue.
- neocortical epilepsy
- epilepsy that originates in the brain's cortex, or outer layer. Seizures can be either focal or generalized, and may cause strange sensations, hallucinations, or emotional changes.
- a parasitic infection of the brain that can cause seizures.
- nerve signaling chemicals.
- any type of seizure that does not include violent muscle contractions.
- nonepileptic events
- any phenomena that look like seizures but do not result from abnormal brain activity. Nonepileptic events may include psychogenic seizures or symptoms of medical conditions such as sleep disorders, Tourette syndrome, or cardiac arrythmia.
- partial seizures
- another term used to describe focal seizures, those that occur in just one part of the brain.
- PET (photon emission tomography)
- a type of brain scan that can be used to monitor the brain's activity and detect abnormalities in how it works.
- petit mal seizures
- an older term for absence seizures.
- photosensitive epilepsy
- epilepsy with seizures triggered by flickering or flashing lights. It also may be called photic epilepsy or photogenic epilepsy.
- a drug that can be used to treat infantile spasms.
- progressive epilepsy
- epilepsy in which seizures and/or the person's cognitive abilities get worse over time.
- progressive myoclonus epilepsy
- a type of epilepsy that has been linked to an abnormality in the gene that codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins.
- psychogenic seizure
- a type of non-epileptic event that is caused by psychological factors.
- Rasmussen's encephalitis
- a progressive type of epilepsy in which half of the brain shows continual inflammation.
- seizure focus
- an area of the brain where seizures originate.
- seizure threshold
- a term that refers to a person's susceptibility to seizures.
- seizure triggers
- phenomena that trigger seizures in some people. Seizure triggers do not cause epilepsy but can lead to first seizures or cause breakthrough seizures in people who otherwise experience good seizure control with their medication.
- simple focal seizures
- seizures that affect only one part of the brain. People experiencing simple focal seizures remain conscious but may experience unusual feelings or sensations.
- SPECT (single photon emission computed tomography)
- a type of brain scan sometimes used to locate seizure foci in the brain.
- status epilepticus
- a potentially life-threatening condition in which a seizure is abnormally prolonged. Although there is no strict definition for the time at which a seizure turns into status epilepticus, most people agree that any seizure lasting longer than 5 minutes should, for practical purposes, be treated as though it was status epilepticus.
- similar every time. In epilepsy this refers to the symptoms an individual person has, and the progression of those symptoms.
- sudden unexplained death
- death that occurs suddenly for no discernible reason. Epilepsy increases the risk of sudden explained death about two-fold.
- temporal lobe epilepsy
- the most common epilepsy syndrome with focal seizures.
- temporal lobe resection
- a type of surgery for temporal lobe epilepsy in which all or part of the affected temporal lobe of the brain is removed.
- tonic seizures
- seizures that cause stiffening of muscles of the body, generally those in the back, legs, and arms.
- tonic-clonic seizures
- seizures that cause a mixture of symptoms, including loss of consciousness, stiffening of the body, and repeated jerks of the arms and legs. In the past these seizures were sometimes referred to as grand mal seizures.
- transcranial magnetic stimulation (TMS)
- a procedure which uses a strong magnet held outside the head to influence brain activity. This is an experimental treatment for seizures.