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Get Web page suited for printing Few experiences match the drama of a convulsive seizure. A
person having a severe seizure may cry out, fall to the floor unconscious, twitch or move
uncontrollably, drool, or even lose bladder control. Within minutes, the attack is over,
and the person regains consciousness but is exhausted and dazed. This is the image most
people have when they hear the word epilepsy. However, this type of seizure a
generalized tonic-clonic seizure* is only one kind of epilepsy. There are many
other kinds, each with a different set of symptoms. 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. Epilepsy is a brain disorder in which clusters of nerve
cells, or neurons, in the brain sometimes signal abnormally. Neurons normally generate
electrochemical impulses that act on other neurons, glands, and muscles to produce human
thoughts, feelings, and actions. 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. During a seizure, neurons may fire as many as
500 times a second, much faster than the normal rate of about 80 times a second. In some
people, this happens only occasionally; for others, it may happen up to hundreds of times
a day. 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 20 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. Epilepsy is a disorder with many possible causes. 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, 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 brains 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 neurons 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. Research suggests that genetic abnormalities may be some
of the most important factors contributing to epilepsy. Some types of epilepsy have been
traced to an abnormality in a specific gene. Many other types of epilepsy tend to run in
families, which suggests that genes influence epilepsy. Some researchers estimate that
more than 500 genes could play a role in this disorder. However, it is increasingly clear
that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps
by increasing a persons susceptibility to seizures that are triggered by an
environmental factor. 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 LaForas 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 bodys response to medications and each
persons 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. In many cases, epilepsy develops as a result of brain
damage from other disorders. For example, brain tumors, alcoholism, and Alzheimers
disease frequently lead to epilepsy because they alter the normal workings of the brain.
Strokes, heart attacks, and other conditions that deprive the brain of oxygen also can
cause epilepsy in some cases. About 32 percent of all newly developed epilepsy in elderly
people appears to be due to cerebrovascular disease, which reduces the supply of oxygen to
brain cells. Meningitis, AIDS, viral encephalitis, and other infectious diseases can lead
to epilepsy, as can hydrocephalus a condition in which excess fluid builds up in
the brain. Epilepsy also can result from intolerance to wheat gluten (known as celiac
disease), or from a parasitic infection of the brain called neurocysticercosis.
Seizures may stop once these disorders are treated successfully. However, the odds of
becoming seizure-free after the primary disorder is treated are uncertain and vary
depending on the type of disorder, the brain region that is affected, and how much brain
damage occurred prior to treatment. Epilepsy is associated with a variety of developmental and
metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate deficiency,
tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of
symptoms commonly found in people with these disorders. In some cases, head injury can lead to seizures or
epilepsy. Safety measures such as wearing seat belts in cars and using helmets when riding
a motorcycle or playing competitive sports can protect people from epilepsy and other
problems that result from head injury. The developing brain is susceptible to many kinds of
injury. Maternal infections, poor nutrition, and oxygen deficiencies are just some of the
conditions that may take a toll on the brain of a developing baby. These conditions may
lead to cerebral palsy, which often is associated with epilepsy, or they may cause
epilepsy that is unrelated to any other disorders. About 20 percent of seizures in
children are due to cerebral palsy or other neurological abnormalities. Abnormalities in
genes that control development also may contribute to epilepsy. Advanced brain imaging has
revealed that some cases of epilepsy that occur with no obvious cause may be associated
with areas of dysplasia in the brain that probably develop before birth. Seizures can result from exposure to lead, carbon
monoxide, and many other poisons. They also can result from exposure to street drugs and
from overdoses of antidepressants and other medications. 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. Doctors have described more than 30 different types of
seizures. Seizures are divided into two major categories partial seizures and
generalized seizures. However, there are many different types of seizures in each
of these categories. Partial seizures occur in just one part of the brain.
About 60 percent of people with epilepsy have partial seizures. These seizures are
frequently described by the area of the brain in which they originate. For example,
someone might be diagnosed with partial frontal lobe seizures. In a simple partial seizure, the person will remain
conscious but may 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 partial 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 partial seizure may display strange,
repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a
circle. These repetitious movements are called automatisms. They also may fling
objects across the room or strike out at walls or furniture as though they are angry or
afraid. These seizures usually last just a few seconds. Some people with partial seizures, especially complex
partial seizures, may experience auras unusual sensations that warn of an
impending seizure. These auras are actually simple partial seizures in which the person
maintains consciousness. The symptoms an individual person has, and the progression of
those symptoms, tends to be stereotyped, or similar every time. The symptoms of partial seizures can easily be confused
with other disorders. For instance, the dreamlike perceptions associated with a complex
partial seizure may be misdiagnosed as migraine headaches, which also can cause a
dreamlike state. The strange behavior and sensations caused by partial seizures also can
be mistaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many
tests and careful monitoring by a knowledgeable physician to tell the difference between
epilepsy and other disorders. Generalized seizures are a result of abnormal neuronal
activity in many parts of the brain. These seizures may cause loss of consciousness,
falls, or massive muscle spasms. 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 nod 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 partial
or generalized. Some people have seizures that begin as partial seizures but then spread
to the entire brain. Other people may have both types of seizures but with no clear
pattern. Societys 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 persons control. In some cases,
this has led to the affected person being arrested, sued, or placed in a mental
institution. To combat these problems, people everywhere need to understand the many
different types of seizures and how they may appear. Just as there are many different kinds of seizures, there
are many different kinds of epilepsy. Doctors have identified hundreds of different epilepsy
syndromes disorders characterized by a specific set of symptoms that include
epilepsy. Some of these syndromes appear to be hereditary. For other syndromes, the cause
is unknown. Epilepsy syndromes are frequently described by their symptoms or by where in
the brain they originate. People should discuss the implications of their type of epilepsy
with their doctors to understand the full range of symptoms, the possible treatments, and
the prognosis. 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. Psychomotor epilepsyPsychomotor epilepsy is another term for recurrent partial
seizures, especially seizures of the temporal lobe. The term psychomotor refers to the
strange sensations, emotions, and behavior seen with these seizures. Temporal lobe epilepsyTemporal lobe epilepsy, or TLE,
is the most common epilepsy syndrome with partial 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. Frontal lobe epilepsyFrontal lobe epilepsy usually
involves a cluster of short seizures with a sudden onset and termination. There are many
subtypes of frontal lobe seizures. The symptoms depend on where in the frontal lobe the
seizures occur. Occipital lobe epilepsyOccipital lobe epilepsy
usually begins with visual hallucinations, rapid eye blinking, or other eye-related
symptoms. Otherwise, it resembles temporal or frontal lobe epilepsy. The symptoms of parietal lobe epilepsy closely
resemble those of other types of epilepsy. This may reflect the fact that parietal lobe
seizures tend to spread to other areas of the brain. There are many other types of epilepsy, each with its own characteristic set of
symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussens
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. Rasmussens 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 are usually present for life once they develop. Seizure syndromes
do not always appear in childhood. For example, Ramsay Hunt syndrome type II is a
rare and severe progressive type of epilepsy that generally begins in early adulthood and
leads to reduced muscle coordination and cognitive abilities in addition to seizures. Epilepsy syndromes that do not seem to impair cognitive functions or development 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 persons cognitive or
motor 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. While any seizure is cause for concern, having a seizure
does not by itself mean a person has epilepsy. First seizures, febrile seizures,
nonepileptic events, and eclampsia are examples of seizures that may not be associated
with epilepsy. Many people have a single seizure at some point in their
lives. Often these seizures occur in reaction to anesthesia or a strong drug, but they
also may be unprovoked, meaning that they occur without any obvious triggering factor.
Unless the person has suffered brain damage or there is a family history of epilepsy or
other neurological abnormalities, these single seizures usually are not followed by
additional seizures. One recent study that followed patients for an average of 8 years
found that only 33 percent of people have a second seizure within 4 years after an initial
seizure. People who did not have a second seizure within that time remained seizure-free
for the rest of the study. For people who did have a second seizure, the risk of a third
seizure was about 73 percent on average by the end of 4 years. 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 persons brain waves. The doctor 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. Sometimes a child will have a seizure during the course of
an illness with a high fever. These seizures are called febrile seizures (febrile
is derived from the Latin word for "fever") and can be very alarming to the
parents and other caregivers. In the past, doctors usually prescribed a course of
anticonvulsant drugs following a febrile seizure in the hope of preventing epilepsy.
However, most children who have a febrile seizure do not develop epilepsy, and long-term
use of anticonvulsant drugs in children may damage the developing brain or cause other
detrimental side effects. Experts at a 1980 consensus conference coordinated by the
National Institutes of Health concluded that preventive treatment after a febrile seizure
is generally not warranted unless certain other conditions are present: a family history
of epilepsy, signs of nervous system impairment prior to the seizure, or a relatively
prolonged or complicated seizure. The risk of subsequent non-febrile seizures is only 2 to
3 percent unless one of these factors is present. 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. Sometimes people appear to have seizures, even though their brains show no seizure
activity. This type of phenomenon has various names, including nonepileptic events and
pseudoseizures. Both of these terms essentially mean something that looks like a seizure
but isnt one. Nonepileptic events that are psychological in origin may be referred
to as psychogenic seizures. Psychogenic seizures may indicate dependence, a need for
attention, avoidance of stressful situations, or specific psychiatric conditions. Some
people with epilepsy have psychogenic seizures in addition to their epileptic seizures.
Other people who have psychogenic seizures do not have epilepsy at all. Psychogenic
seizures cannot be treated in the same way as epileptic seizures. Instead, they are often
treated by mental health specialists. Other nonepileptic events may be caused by narcolepsy,
Tourette syndrome, cardiac arrhythmia, 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. Eclampsia is a life-threatening condition that can develop
in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures.
Pregnant women who develop unexpected seizures should be rushed to a hospital immediately.
Eclampsia can be treated in a hospital setting and usually does not result in additional
seizures or epilepsy once the pregnancy is over. Doctors have developed a number of different tests to
determine whether a person has epilepsy and, if so, what kind of seizures the person has.
In some cases, people may have symptoms that look very much like a seizure but in fact are
nonepileptic events caused by other disorders. Even doctors may not be able to tell the
difference between these disorders and epilepsy without close observation and intensive
testing. An EEG records brain waves detected by electrodes placed on the scalp. This is the most
common diagnostic test for epilepsy and can detect abnormalities in the brains
electrical activity. People with epilepsy frequently have changes in their normal pattern
of brain waves, even when they are not experiencing a seizure. While this type of test can
be very useful in diagnosing epilepsy, it is not foolproof. Some people continue to show
normal brain wave patterns even after they have experienced a seizure. In other cases, the
unusual brain waves are generated deep in the brain where the EEG is unable to detect
them. Many people who do not have epilepsy also show some unusual brain activity on an
EEG. Whenever possible, an EEG should be performed within 24 hours of a patients
first seizure. Ideally, EEGs should be performed while the patient is sleeping as well as
when he or she is awake, because brain activity during sleep is often quite different than
at other times. Video monitoring is often used in conjunction with EEG to determine the nature of a
persons seizures. It also can be used in some cases to rule out other disorders such
as cardiac arrhythmia or narcolepsy that may look like epilepsy. In some cases, doctors may use an experimental diagnostic
technique 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. One of the most important ways of diagnosing epilepsy is through the use of brain
scans. The most commonly used brain scans include CT (computed tomography), PET
(positron emission tomography) and MRI (magnetic resonance imaging). CT and MRI
scans reveal the structure of the brain, which can be useful for identifying brain tumors,
cysts, and other structural abnormalities. PET and an adapted kind of MRI called functional
MRI (fMRI) can be used to monitor the brains activity and detect abnormalities
in how it works. SPECT (single photon emission computed tomography) is a
relatively new kind of brain scan that is sometimes used to locate seizure foci in the
brain. Doctors also are experimenting with brain scans called magnetic resonance
spectroscopy (MRS) that can detect abnormalities in the brains
biochemical processes, and with near-infrared spectroscopy, a technique that can
detect oxygen levels in brain tissue. Taking a detailed medical history, including symptoms and duration of the seizures, is
still one of the best methods available to determine if a person has epilepsy and what
kind of seizures they have. The doctor will ask questions about the seizures and any past
illnesses or other symptoms a person may have had. Since people who have suffered a
seizure often do not remember what happened, caregivers accounts of the seizure are
vital to this evaluation. Doctors often take blood samples for testing, particularly
when they are examining a child. These blood samples are often screened for metabolic or
genetic disorders that may be associated with the seizures. They also may be used to check
for underlying problems such as infections, lead poisoning, anemia, and diabetes that may
be causing or triggering the seizures. Doctors often use tests devised to measure motor
abilities, behavior, and intellectual capacity as a way to determine how the epilepsy is
affecting that person. These tests also can provide clues about what kind of epilepsy the
person has. Many cases of epilepsy can be prevented by wearing
seatbelts and bicycle helmets, putting children in car seats, and other measures that
prevent head injury and other trauma. Prescribing medication after first or second
seizures or febrile seizures also may help prevent epilepsy in some cases. Good prenatal
care, including treatment of high blood pressure and infections during pregnancy, can
prevent brain damage in the developing baby that may lead to epilepsy and other
neurological problems later. Treating cardiovascular disease, high blood pressure,
infections, and other disorders that can affect the brain during adulthood and aging also
may prevent many cases of epilepsy. Finally, identifying the genes for many neurological
disorders can provide opportunities for genetic screening and prenatal diagnosis that may
ultimately prevent many cases of epilepsy. Accurate diagnosis of the type of epilepsy a person has is crucial for finding an
effective treatment. There are many different ways to treat epilepsy. Currently available
treatments can control seizures at least some of the time in about 80 percent of people
with epilepsy. However, another 20 percent about 600,000 people with epilepsy in
the United States have intractable seizures, and another 400,000 feel they get
inadequate relief from available treatments. These statistics make it clear that improved
treatments are desperately needed. 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 persons 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 doctors advice and share any concerns they may
have regarding their medication. Doctors seeing a patient with newly developed epilepsy often prescribe carbamazapine,
valproate, 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. In recent years, a number of new drugs have become available. These include
tiagabine, lamotrigine, gabapentin, topiramate, levetiracetam, and felbamate, as well as
oxcarbazapine, a drug that is similar to carbamazapine but has fewer side effects. These
new drugs may have advantages for many patients. 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 persons 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 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 patients seizures. The number of times a person needs to take medication each day is usually determined by
the drugs 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 more frequently. 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 should 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. When a person starts a new epilepsy drug, it is important to tailor the dosage to
achieve the best results. Peoples bodies react to medications in very different and
sometimes unpredictable ways, so it may take some time to find the right drug at the right
dose to provide optimal control of seizures while minimizing side effects. A drug that has
no effect or very bad side effects at one dose may work very well at another dose. Doctors
will usually prescribe a low dose of the new drug initially and monitor blood levels of
the drug to determine when the best possible dose has been reached. 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. Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs
after two years have passed without a seizure. Others feel it is better to wait for four
to five years. Discontinuing medication should only be done with a doctors
advice and supervision. It is very important to continue taking epilepsy medication for as
long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of
time what they should do if they miss a dose. Discontinuing medication without a
doctors advice is one of the major reasons people who have been seizure-free begin
having new seizures. Seizures that result from suddenly stopping medication can be very
serious and can lead to status epilepticus. Furthermore, there is some evidence that
uncontrolled seizures trigger changes in neurons that can make it more difficult to treat
the seizures in the future. The chance that a person will eventually be able to discontinue medication varies
depending on the persons 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 partial seizures, and those who continue to have abnormal EEG results while on
medication. When seizures cannot be adequately controlled by
medications, doctors may recommend that the person be evaluated for surgery. Most surgery
for epilepsy is performed by teams of doctors at medical centers. To decide if a person
may benefit from surgery, doctors consider the type or types of seizures he or she has.
They also take into account the brain region involved and how important that region is for
everyday behavior. Surgeons usually avoid operating in areas of the brain that are
necessary for speech, language, hearing, or other important abilities. Doctors may perform
tests such as a WADA test (administration of the drug amobarbitol into the carotid artery)
to find areas of the brain that control speech and memory. They often monitor the patient
intensively prior to surgery in order to pinpoint the exact location in the brain where
seizures begin. They also may use implanted electrodes to record brain activity from the
surface of the brain. This yields better information than an external EEG. 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 partial seizures, seizures that begin as partial
seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy
with infantile hemiplegia (such as Rasmussens 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
abnormally functioning area believed to cause the seizures. 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 persons 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. In cases where seizures are caused by a brain tumor, hydrocephalus, or other conditions
that can be treated with surgery, doctors may operate to treat these underlying
conditions. In many cases, once the underlying condition is successfully treated, a
persons seizures will stop as well. The most common type of surgery for epilepsy is removal of
a seizure focus, or small area of the brain where seizures originate. This type of
surgery, which doctors may refer to as a lobectomy or lesionectomy, is
appropriate only for partial seizures that originate in just one area of the brain. In
general, people have a better chance of becoming seizure-free after surgery if they have a
small, well-defined seizure focus. Lobectomies have a 55-70 percent success rate when the
type of epilepsy and the seizure focus is well-defined. The most common type of lobectomy
is a temporal lobe resection, which is performed for people with temporal lobe
epilepsy. Temporal lobe resection leads to a significant reduction or complete cessation
of seizures about 70 - 90 percent of the time. When seizures originate in part of the brain that cannot be removed, surgeons may
perform a procedure called a multiple subpial transection. In this type of
operation, which was first described in 1989, surgeons make a series of cuts that are
designed to prevent seizures from spreading into other parts of the brain while leaving
the persons normal abilities intact. About 70 percent of patients who undergo a
multiple subpial transection have satisfactory improvement in seizure control. Corpus callosotomy, Corpus callosotomy, or severing
the network of neural connections between the right and left halves, or hemispheres,
of the brain, is done primarily in children with severe seizures that start in one half of
the brain and spread to the other side. Corpus callosotomy can end drop attacks and other
generalized seizures. However, the procedure does not stop seizures in the side of the
brain where they originate, and these partial seizures may even increase after surgery. This procedure, which removes half of the brains cortex, or outer layer, is used
only for children who have Rasmussens encephalitis or other severe damage to one
brain hemisphere and who also have seizures that do not respond well to medication. While
this type of surgery is very radical and is performed only as a last resort, children
often recover very well from the procedure, and their seizures usually are greatly reduced
or may cease altogether. With intense rehabilitation, they often recover nearly normal
abilities. Since the chance of a full recovery is best in young children, hemispherectomy
should be performed as early in a childs life as possible. It is almost never
performed in children older than 13. The vagus nerve stimulator was approved by the U.S. Food
and Drug Administration (FDA) in 1997 for use in people with seizures that are not
well-controlled by medication. The vagus nerve stimulator is a battery-powered device that
is surgically implanted under the skin of the chest, much like a pacemaker, and is
attached to the vagus nerve in the lower neck. This device delivers short bursts of
electrical energy to the brain via the vagus nerve. On average, this stimulation reduces
seizures by about 20-40 percent. Patients usually cannot stop taking epilepsy medication
because of the stimulator, but they often experience fewer seizures and they may be able
to reduce the dose of their medication. Side effects of the vagus nerve stimulator are
generally mild, but may include ear pain, a sore throat, or nausea. Adjusting the amount
of stimulation can usually eliminate these side effects. The batteries in the vagus nerve
stimulator need to be replaced about once every 5 years; this requires a minor operation
that can usually be performed as an outpatient procedure. Several new devices may become available for epilepsy in
the future. Researchers are studying whether transcranial magnetic stimulation, 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. Studies have shown that, in some cases, children may
experience fewer seizures if they maintain a strict diet rich in fats and low in
carbohydrates. This unusual diet, called the ketogenic diet, causes the body to
break down fats instead of carbohydrates to survive. This condition is called ketosis. One
study of 150 children whose seizures were poorly controlled by medication found that about
one-fourth of the children had a 90 percent or better decrease in seizures with the
ketogenic diet, and another half of the group had a 50 percent or better decrease in their
seizures. Moreover, some children can discontinue the ketogenic diet after several years
and remain seizure-free. The ketogenic diet is not easy to maintain, as it requires strict
adherence to an unusual and limited range of foods. Possible side effects include retarded
growth due to nutritional deficiency and a buildup of uric acid in the blood, which can
lead to kidney stones. People who try the ketogenic diet should seek the guidance of a
dietician to ensure that it does not lead to serious nutritional deficiency. 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. Researchers are studying whether biofeedback a strategy in which individuals
learn to control their own brain waves may be useful in controlling seizures.
However, this type of therapy is controversial and most studies have shown discouraging
results. Taking large doses of vitamins generally does not help a persons seizures
and may even be harmful in some cases. However, a good diet and some vitamin supplements,
particularly folic acid, may help reduce some birth defects and medication-related
nutritional deficiencies. Use of non-vitamin supplements such as melatonin is
controversial and can be risky. One study showed that melatonin may reduce seizures in
some children, while another found that the risk of seizures increased measurably with
melatonin. Most non-vitamin supplements such as those found in health food stores are not
regulated by the FDA, so their true effects and their interactions with other drugs are
largely unknown. Most people with epilepsy lead outwardly normal lives.
Approximately 80 percent can be significantly helped by modern therapies, and some may go
months or years between seizures. However, epilepsy can and does affect daily life for
people with epilepsy, their families, and their friends. People with severe seizures that
resist treatment have, on average, a shorter life expectancy and an increased risk of
cognitive impairment, particularly if the seizures developed in early childhood. These
impairments may be related to the underlying conditions that cause epilepsy or to epilepsy
treatment rather than the epilepsy itself. It is not uncommon for people with epilepsy, especially children, to develop behavioral
and emotional problems. Sometimes these problems are caused by embarrassment or
frustration associated with epilepsy. Other problems may result from bullying, teasing, or
avoidance in school and other social settings. In children, these problems can be
minimized if parents encourage a positive outlook and independence, do not reward negative
behavior with unusual amounts of attention, and try to stay attuned to their childs
needs and feelings. Families must learn to accept and live with the seizures without
blaming or resenting the affected person. Counseling services can help families cope with
epilepsy in a positive manner. Epilepsy support groups also can help by providing a way
for people with epilepsy and their family members to share their experiences,
frustrations, and tips for coping with the disorder. 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. For many people with epilepsy, the risk of seizures restricts their independence, in
particular the ability to drive. Most states and the District of Columbia will not issue a
drivers license to someone with epilepsy unless the person can document that they
have gone a specific amount of time without a seizure (the waiting period varies from a
few months to several years). Some states make exceptions for this policy when seizures
dont impair consciousness, occur only during sleep, or have long auras or other
warning signs that allow the person to avoid driving when a seizure is likely to occur.
Studies show that the risk of having a seizure-related accident decreases as the length of
time since the last seizure increases. One study found that the risk of having a
seizure-related motor vehicle accident is 93 percent less in people who wait at least 1
year after their last seizure before driving, compared to people who wait for shorter
intervals. The risk of seizures also restricts peoples recreational choices. For instance,
people with epilepsy should not participate in sports such as skydiving or motor racing
where a moments 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. By law, people with epilepsy or other handicaps in the United States cannot be denied
employment or access to any educational, recreational, or other activity because of their
seizures. However, one survey showed that only about 56 percent of people with epilepsy
finish high school and about 15 percent finish college rates much lower than those
for the general population. The same survey found that about 25 percent of working-age
people with epilepsy are unemployed. These numbers indicate that significant barriers
still exist for people with epilepsy in school and work. Restrictions on driving limit the
employment opportunities for many people with epilepsy, and many find it difficult to face
the misunderstandings and social pressures they encounter in public situations.
Antiepileptic drugs also may cause side effects that interfere with concentration and
memory. Children with epilepsy may need extra time to complete schoolwork, and they
sometimes may need to have instructions or other information repeated for them. Teachers
should be told what to do if a child in their classroom has a seizure, and parents should
work with the school system to find reasonable ways to accommodate any special needs their
child may have. Women with epilepsy are often concerned about whether they can become pregnant and have
a healthy child. This is usually possible. While some seizure medications and some types
of epilepsy may reduce a persons interest in sexual activity, most people with
epilepsy can become pregnant. Moreover, women with epilepsy have a 90 percent or better
chance of having a normal, healthy baby, and the risk of birth defects is only about 4-6
percent. The risk that children of parents with epilepsy will develop epilepsy themselves
is only about 5 percent unless the parent has a clearly hereditary form of the disorder.
Parents who are worried that their epilepsy may be hereditary may wish to consult a
genetic counselor to determine what the risk might be. Amniocentesis and high-level
ultrasound can be performed during pregnancy to ensure that the baby is developing
normally, and a procedure called a maternal serum alpha-fetoprotein test can be used for
prenatal diagnosis of many conditions if a problem is suspected. 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, trimethadione, 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 womans 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 womans 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 mothers 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 mothers blood levels of
anticonvulsant medication should be checked frequently after delivery as medication often
needs to be decreased. Epilepsy medications need not influence a womans 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 617-726-7739 (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. Although most people with epilepsy lead full, active
lives, they are at special risk for two life-threatening conditions: status epilepticus
and sudden unexplained death. Status epilepticus is a severe, life-threatening condition
in which a person either has prolonged seizures or does not fully regain consciousness
between seizures. The amount of time in a prolonged seizure that must pass before a person
should be diagnosed with status epilepticus is a subject of debate. Many doctors now
diagnose status epilepticus if a person has been in a prolonged seizure for 5 minutes.
However, other doctors use more conservative definitions of this condition and may not
diagnose status epilepticus unless the person has had a prolonged seizure of 10 minutes or
even 30 minutes. 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. For reasons that are poorly understood, people with
epilepsy have an increased risk of dying suddenly for no discernible reason. This
condition, called sudden unexplained death, can occur in people without epilepsy,
but epilepsy increases the risk about two-fold. Researchers are still unsure why sudden
unexplained death occurs. One study suggested that use of more than two anticonvulsant
drugs may be a risk factor. However, it is not clear whether the use of multiple drugs
causes the sudden death, or whether people who use multiple anticonvulsants have a greater
risk of death because they have more severe types of epilepsy. While research has led to many advances in understanding and treating epilepsy, there
are many unanswered questions about how and why seizures develop, how they can best be
treated or prevented, and how they influence other brain activity and brain development.
Researchers, many of whom are supported by the National Institute of Neurological
Disorders and Stroke (NINDS), are studying all of these questions. They also are working
to identify and test new drugs and other treatments for epilepsy and to learn how those
treatments affect brain activity and development. NINDS Epilepsy Therapeutics
Research Program studies potential antiepileptic drugs with the goal of enhancing
treatment for epilepsy. Since it began in 1975, this program has screened more than 22,000
compounds for their potential as antiepileptic drugs and has contributed to the
development of five drugs that are now approved for use in the United States as well as
others that are still being developed or tested. 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. Researchers may soon be able to use devices called gene chips
to determine each persons genetic makeup or to learn which genes are active. 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. There are many ways that people with epilepsy and their
families can help with research on this disorder. Pregnant women with epilepsy who are
taking antiepileptic drugs can help researchers learn how these drugs affect unborn
children by participating in the Antiepileptic Drug Pregnancy Registry, which is
maintained by the Genetics and Teratology Unit of Massachusetts General Hospital (see
section on Pregnancy and Motherhood). People with epilepsy that may be hereditary
can aid research by participating in the Epilepsy Gene Discovery Project, which is
supported by the Epilepsy Foundation. This project helps to educate people with epilepsy
about new genetic research on the disorder and enlists families with hereditary epilepsy
for participation in gene research. People who enroll in this project are asked to create
a family tree showing which people in their family have or have had epilepsy. Researchers
then examine this information to determine if the epilepsy is in fact hereditary, and they
may invite participants to enroll in genetic research studies. In many cases, identifying
the gene defect responsible for epilepsy in an individual family leads researchers to new
clues about how epilepsy develops. It also can provide opportunities for early diagnosis
and genetic screening of individuals in the family. 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 certain that the therapies are safe. Patients should be certain
they understand the risks before agreeing to participate in a clinical trial. NINDS supports a number of Epilepsy Research Centers that
perform a broad spectrum of clinical research on epilepsy. Some of the studies require
patient volunteers. A list of these centers is available from the NIH Neurological
Institute, which can be reached at the address and phone number found on the Information
Resources card in the back pocket of this brochure. 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: Brain and Tissue Bank for Neurological Disorders If you see someone having a seizure with convulsions and/or loss of consciousness,
heres how you can help: 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 doesnt 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 persons
behavior is not intentional. The person may wander aimlessly or make alarming or unusual
gestures. You can help by following these guidelines: Many people with epilepsy lead productive and outwardly
normal lives. Many medical and research advances in the past two decades have led to a
better understanding of epilepsy and seizures than ever before. Advanced brain scans and
other techniques allow greater accuracy in diagnosing epilepsy and determining when a
patient may be helped by surgery. More than 20 different medications and a variety of
surgical techniques are now available and provide good control of seizures for most people
with epilepsy. Other treatment options include the ketogenic diet and the first
implantable device, the vagus nerve stimulator. Research on the underlying causes of
epilepsy, including identification of genes for some forms of epilepsy and febrile
seizures, has led to a greatly improved understanding of epilepsy that may lead to more
effective treatments or even new ways of preventing epilepsy in the future. The National Institute of Neurological Disorders and
Stroke, a component of the National Institutes of Health, is the leading Federal supporter
of research on disorders of the brain and nervous system. The Institute also sponsors an
active public information program with staff who can answer questions about diagnosis and
research related to seizures and epilepsy. For information on seizures or other neurological disorders, contact the Institute's Brain Resources and Information Network (BRAIN) at: BRAIN Private voluntary organizations that provide information on treatment, diagnosis, and services include the following: The American Epilepsy Society, one of the oldest
neurological professional organizations in the country, promotes research and education
for professionals interested in seizure disorders and epilepsy. Membership consists of
clinicians, scientists investigating basic and clinical aspects of epilepsy, and other
professionals interested in both pediatric and adult seizure disorders. The Society
develops resources and collaborative relationships worldwide to advance patient care and
to support efforts leading to the prevention, treatment, and cure of epilepsy. It also
holds an annual scientific meeting that attracts more than 3,500 professionals. CURE is a global grassroots organization dedicated to
finding a cure for pediatric intractable epilepsy. CURE works to stimulate innovative
epilepsy research through private funding sources and by publishing the long overlooked
need for a cure for this disease. The Epilepsy Foundation is a national voluntary health
agency that works for people affected by seizures through research, education, advocacy,
and service. Its goals are the prevention and cure of seizure disorders, the alleviation
of their effects, and the promotion of independence and optimal quality of life for people
who have these disorders. Epilepsy Foundation affiliates serve people with epilepsy and
their families in more than 100 communities throughout the United States. The goals of this Association, which includes the majority
of specialized epilepsy centers in the U.S., are to provide information about the care of
patients with epilepsy to the appropriate government and industry officials; to exchange
information among its members; and to participate in developing standards for programs
providing services. The National Organization for Rare Disorders (NORD), a
federation of voluntary health organizations dedicated to helping people with rare
"orphan"diseases, is committed to the identification, treatment, and cure of
rare disorders through programs of education, advocacy, research, and service. For information on prescription medicines, contact: The National Council on Patient Information and Education
is a coalition of organizations committed to providing patients, consumers, and caregivers
with useful and appropriate medicine information. Pregnant women with epilepsy can help researchers learn
how epilepsy drugs affect unborn children by participating in the following program: Other support organizations include: Services offered by the Family Caregiver Alliance include
specialized information and assistance, consultation on long-term care planning, service
linkage and arrangement, legal and financial consultation, respite services, counseling,
and education. Through its services in the areas of education and information, support and validation,
public awareness, and advocacy, the National Family Caregivers Association strives to
improve caregivers quality of life. Note: Due to the large number of epilepsy syndromes and
treatments, only a few are discussed in this booklet. Additional information may be
available from your doctor or other health professionals, from medical libraries, or by
calling the NINDS Office of Communications and Public Liaison at the number provided on
the Information Resources card in the back pocket of this brochure. NINDS Office of Communications and Public Liaison Reviewed June 6, 2000 | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
