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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 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
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 person’s 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 LaFora 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.
In many cases, epilepsy develops as a result of brain damage from other
disorders. For example, brain tumors, alcoholism, and Alzheimer’s 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.
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, 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 epilepsy. Psychomotor 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 epilepsy. Temporal 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 epilepsy. Frontal 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 epilepsy. Occipital 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 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 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 person’s 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 person’s 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 isn’t 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 brain’s 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 patient’s 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 person’s 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 brain’s
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 brain’s 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
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
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, felbamate,
and zonisamide, 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 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
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 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. Tailoring the dosage of
antiepileptic drugs
When a person starts a new epilepsy drug, it is important to tailor the
dosage to achieve the best results. People’s 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. Discontinuing 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 doctor’s 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 doctor’s 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 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 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 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 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 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
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 person’s seizures will stop as
well. Surgery to remove a seizure focus
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. Multiple subpial transection
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 person’s
normal abilities intact. About 70 percent of patients who undergo a
multiple subpial transection have satisfactory improvement in seizure
control. Corpus callosotomy
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. Hemispherectomy
This procedure, which removes half of the brain’s cortex, or outer
layer, is used only for children who have Rasmussen’s 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
child’s 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 person’s 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 child’s 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 driver’s 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 don’t 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 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.
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 person’s
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 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
617-726-7739 (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
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 person’s 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.
If you see someone having a seizure with convulsions and/or loss of
consciousness, here’s how you can help:
- 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.
- 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 and 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 he or she has 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.
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.
Keeping on Top of Your Condition
Keeping in tune with your disease or condition not only makes treatment less intimidating but also increases its chance of success, and has been shown to lower a patients risk of complications. As well, as an informed patient, you are better able to discuss your condition and treatment options with your physician.
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BRAIN
P.O. Box 5801
Bethesda, Maryland 20824
800-352-9424
http://www.ninds.nih.gov/
American Epilepsy
Society
342 North Main Street
West Hartford, Connecticut
06117
860-586-7505
http://www.aesnet.org/
Citizens United for Research in Epilepsy (CURE)
505 North
Lake Shore Drive, #4605
Chicago, Illinois
60611
312-923-9117
312-923-9118 (fax)
CUReepi@aol.com
http://www.cureepilepsy.org/
Epilepsy
Foundation
4351 Garden City Drive
Suite 500
Landover,
Maryland 20785
301-459-3700
800-332-1000
301-577-2684
(fax)
postmaster@efa.org
http://www.epilepsyfoundation.org/
National Association of Epilepsy Centers
5775
Wayzata Boulevard
Suite 200
Minneapolis, Minnesota
55416
952-525-4526
Epilepsy Institute
257 Park Avenue South
New York, NY
10010
212-677-8550
212-677-5825
(fax)
website@epilepsyinstitute.org
http://www.epilepsyinstitute.org/
National Organization for Rare Disorders, Inc. (NORD)
55
Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
(203)
744-0100
(800) 999-6673 (voicemail only)
Fax: (203) 798-2291
http://www.rarediseases.org/
National Council on Patient Information and
Education
4915 St. Elmo Avenue
Suite 505
Bethesda, Maryland
20814
301-656-8565
301-656-4464 (fax)
ncpie@erols.com
http://www.talkaboutrx.org/
Antiepileptic Drug Pregnancy
Registry
Massachusetts General Hospital
Genetics and Teratology
Unit
55 Fruit Street
Boston, Massachusetts
02114
888-233-2334
http://www.aedpregnancyregistry.org/
Family
Caregiver Alliance
690 Market Street, Suite 600
San Francisco,
California 94104
415-434-3388
800-445-8106
415-434-3508
(fax)
info@caregiver.org
http://www.caregiver.org/
National Family Caregivers
Association
10400 Connecticut Avenue
Suite 500
Kensington,
Maryland 20895
301-942-6430
800-896-365
301-942-2302
(fax)
info@nfacares.org
http://www.nfcacares.org/
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