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i

Table of Contents

What are the epilepsies? ................................. 1

What causes the epilepsies? ............................. 4

Genetics................................................. 4

Other Disorders....................................... 6

Seizure Triggers....................................... 7

What are the different kinds of seizures? ............ 9

Focal Seizures......................................... 9

Generalized Seizures................................10

What are the different kinds of epilepsy? ...........12

When are seizures not epilepsy?.......................15

First Seizures.........................................16

Febrile Seizures......................................17

Nonepileptic Events.................................18

Are there special risks associated with 

the epilepsies? .............................................19

Status Epilepticus ...................................19

Sudden Unexpected Death in Epilepsy 

(SUDEP) ..............................................20

How are the epilepsies diagnosed? ....................21

Imaging and Monitoring............................21

Medical History ......................................23

Blood Tests............................................24

Developmental, Neurological, and 

Behavioral Tests .....................................24
Can the epilepsies be prevented?......................25

How can epilepsy be treated? ..........................25

Medications...........................................26

Diet .....................................................30

Surgery ................................................31

Devices.................................................34

What is the impact of the epilepsies on 

daily life? ...................................................36

Mental Health and Stigmatization ...............36

Driving and Recreation ............................37

Education and Employment.......................38

Pregnancy and motherhood.......................39

What research is being done on the epilepsies 

by the NINDS? ............................................43

Mechanisms...........................................43

Improving treatments...............................46

Genetics................................................48

SUDEP (sudden unexpected death 

in epilepsy)............................................51

How can I help research on the epilepsies? .........51

What to do if you see someone having a seizure....54

Call 911 if: ............................................55

Where can I get more information? ..................56

Glossary ....................................................59
1

What are the epilepsies?

The epilepsies are chronic 

neurological disorders in 

which clusters of nerve cells, 

or neurons, in the brain 

sometimes signal abnormally 

and cause seizures. Neurons 

normally generate electrical 

and chemical signals that act 

on other neurons, glands, 

and muscles to produce 

human thoughts, feelings, 

and actions. During a 

seizure, many neurons fire 

(signal) at the same time – as many as 500 times a 

second, much faster than normal. This surge of 

excessive electrical activity happening at the same 

time causes involuntary movements, sensations, 

emotions, and behaviors and the temporary 

disturbance of normal neuronal activity may 

cause a loss of awareness. 

Epilepsy can be considered a spectrum disorder 

because of its different causes, different seizure 

types, its ability to vary in severity and impact 

from person to person, and its range of co-existing 

conditions. Some people may have convulsions1

(sudden onset of repetitive general contraction of 

muscles) and lose consciousness. Others may simply 

stop what they are doing, have a brief lapse of 

awareness, and stare into space for a short period. 

Some people have seizures very infrequently, while 

1 Terms in italics appear in a Glossary found at the end of this 

document.

Clusters of brain cells (neurons) 

sometimes fire or signal faster than 

normal—as many as 500 times 

a second. This surge of excessive 

electrical activity causes seizures.
2

other people may experience hundreds of seizures 

each day. There also are many different types of 

epilepsy, resulting from a variety of causes. Recent 

adoption of the term “the epilepsies” underscores 

the diversity of types and causes.

In general, a person is not considered to have 

epilepsy until he or she has had two or more 

unprovoked seizures separated by at least 24 hours. 

In contrast, a provoked seizure is one caused by 

a known precipitating factor such as a high fever, 

nervous system infections, acute traumatic brain 

injury, or fluctuations in blood sugar or electrolyte 

levels.

Anyone can develop epilepsy. About 2.3 million 

adults and more than 450,000 children and 

adolescents in the United States currently live with 

epilepsy. Each year, an estimated 150,000 people 

are diagnosed with epilepsy. Epilepsy affects both 

males and females of all races, ethnic backgrounds, 

and ages. In the United States alone, the annual 

costs associated with the epilepsies are estimated to 

be $15.5 billion in direct medical expenses and lost 

or reduced earnings and productivity. 

The majority of those diagnosed with epilepsy have 

seizures that can be controlled with drug therapies 

and surgery. However, as much as 30 to 40 percent 

of people with epilepsy continue to have seizures 

because available treatments do not completely 

control their seizures (called intractable or 

medication resistant epilepsy). 
3

While many forms of epilepsy require lifelong 

treatment to control the seizures, for some people 

the seizures eventually go away. The odds of 

becoming seizure-free are not as good for adults or 

for children with severe epilepsy syndromes, but it 

is possible that seizures may decrease or even stop 

over time. This is more likely if the epilepsy starts in 

childhood, has been well-controlled by medication, 

or if the person has had surgery to remove the brain 

focus of the abnormal cell firing. 

Many people with 

epilepsy lead 

productive lives, but 

some will be severely 

impacted by their 

epilepsy. Medical 

and research advances in the past two decades 

have led to a better understanding of the epilepsies 

and seizures. More than 20 different medications 

and a variety of dietary treatments and surgical 

techniques (including two devices) are now available 

and may provide good control of seizures. Devices 

can modulate brain activity to decrease seizure 

frequency. Advance neuroimaging can identify 

brain abnormalities that give rise to seizures 

which can be cured by neurosurgery. Even dietary 

changes can effectively treat certain types of 

epilepsy. Research on the underlying causes of the 

epilepsies, including identification of genes for some 

forms of epilepsy, has led to a greatly improved 

understanding of these disorders that may lead to 

more effective treatments or even to new ways of 

preventing epilepsy in the future. 

About 2.3 million adults and 

more than 450,000 children 

and adolescents in the U.S. 

live with epilepsy.
4

What causes the epilepsies?

The epilepsies have many possible causes, but for up 

to half of people with epilepsy a cause is not known. 

In other cases, the epilepsies are clearly linked to 

genetic factors, developmental brain abnormalities, 

infection, traumatic brain injury, stroke, brain 

tumors, or other identifiable problems. Anything 

that disturbs the normal pattern of neuronal activity 

– from illness to brain damage to abnormal brain 

development – can lead to seizures. 

The epilepsies may develop because of an 

abnormality in brain wiring, an imbalance of nerve 

signaling in the brain (in which some cells either 

over-excite or over-inhibit other brain cells from 

sending messages), or some combination of these 

factors. In some pediatric conditions abnormal 

brain wiring causes other problems such as 

intellectual impairment.

In other persons, 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. Brain malformations and 

abnormalities in brain wiring that occur during 

brain development also may disturb neuronal 

activity and lead to epilepsy. 

Genetics

Genetic mutations may play a key role in the 

development of certain epilepsies. Many types 

of epilepsy affect multiple blood-related family 

members, pointing to a strong inherited genetic 

component. In other cases, gene mutations may 
5

occur spontaneously and contribute to development 

of epilepsy in people with no family history of the 

disorder (called “de novo” mutations). Overall, 

researchers estimate that hundreds of genes could 

play a role in the disorders. 

Several types of epilepsy have been linked to 

mutations in genes that provide instructions for ion 

channels, the “gates” that control the flow of ions in 

and out of cells to help regulate neuronal signaling. 

For example, most infants with Dravet syndrome, a 

type of epilepsy associated with seizures that begin 

before the age of one year, carry a mutation in the 

SCN1A gene that causes seizures by affecting 

sodium ion channels. 

Genetic mutations also have been linked to disorders 

known as the progressive myoclonic epilepsies, 

which are characterized by ultra-quick muscle 

contractions (myoclonus) and seizures over time. 

For example, Lafora disease, a severe, progressive 

form of myoclonic epilepsy that begins in childhood, 

has been linked to a gene that helps to break down 

carbohydrates in brain cells. 

Mutations in genes that control neuronal migration – 

a critical step in brain development – can lead to 

Researchers estimate that hundreds of genes may play a role in the epilepsies.
6

areas of misplaced or abnormally formed neurons, 

called cortical dysplasia, in the brain that can 

cause these mis-wired neurons to misfire and lead 

to epilepsy.

Other genetic mutations may not cause epilepsy, 

but may influence the disorder in other ways. For 

example, one study showed that many people with 

certain forms of epilepsy have an abnormally active 

version of a gene that results in resistance to antiseizure drugs. Genes also may control a person’s 

susceptibility to seizures, or seizure threshold, by 

affecting brain development. 

Other Disorders

Epilepsies may develop as a result of brain damage 

associated with many types of conditions that 

disrupt normal brain activity. Seizures may stop 

once these conditions are treated and resolved. 

However, the chances 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. Examples of conditions 

that can lead to epilepsy include:

• Brain tumors, including those associated with 

neurofibromatosis or tuberous sclerosis complex, 

two inherited conditions that cause benign 

tumors called hamartomas to grow in the brain 

• Head trauma 

• Alcoholism or alcohol withdrawal

• Alzheimer’s disease 

• Strokes, heart attacks, and other conditions that 
7

deprive the brain of oxygen (a significant portion 

of new-onset epilepsy in elderly people is due to 

stroke or other cerebrovascular disease)

• Abnormal blood vessel formation 

(arteriovenous malformations) or bleeding 

in the brain (hemorrhage)

• Inflammation of the brain

• Infections such as meningitis, HIV, and 

viral encephalitis 

Cerebral palsy or other developmental neurological 

abnormalities may also be associated with 

epilepsy. About 20 percent of seizures in children 

can be attributed to developmental neurological 

conditions. Epilepsies often co-occur in people 

with abnormalities of brain development or other 

neurodevelopmental disorders. Seizures are 

more common, for example, among individuals 

with autism spectrum disorder or intellectual 

impairment. In one study, fully a third of children 

with autism spectrum disorder had treatmentresistant epilepsy. 

Seizure Triggers

Seizure triggers do not cause epilepsy but can 

provoke first seizures in those who are susceptible 

or can cause seizures in people with epilepsy who 

otherwise experience good seizure control with 

their medication. Seizure triggers include alcohol 

consumption or alcohol withdrawal, dehydration 

or missing meals, stress, and hormonal changes 

associated with the menstrual cycle. In surveys of 

people with epilepsy, stress is the most commonly 

reported seizure trigger. Exposure to toxins 
8

or poisons such as lead or carbon monoxide, 

street drugs, or even excessively large doses of 

antidepressants or other prescribed medications 

also can trigger seizures. 

Sleep deprivation is a powerful trigger of seizures. 

Sleep disorders are common among people with the 

epilepsies and appropriate treatment of co-existing 

sleep disorders can often lead to improved control 

of seizures. Certain types of seizures tend to occur 

during sleep, while others are more common during 

times of wakefulness, suggesting to physicians how 

to best adjust a person’s medication.

For some people, visual stimulation can trigger 

seizures in a condition known as photosensitive 

epilepsy. Stimulation can include such things as 

flashing lights or moving patterns. 

Many conditions—including infections such as meningitis and viral encephalitis—

that disrupt normal brain activity can lead to epilepsy. This illustration depicts a virus 

attacking brain cells.
9

What are the different kinds of seizures?

Seizures are divided into two major categories – 

focal seizures and generalized seizures. However, 

there are many different types of seizures in each 

of these categories. In fact, doctors have described 

more than 30 different types of seizures.

Focal Seizures

Focal seizures originate in just one part of the brain. 

About 60 percent of people with epilepsy have focal 

seizures. These seizures are frequently described 

by the area of the brain in which they originate. 

Many people are diagnosed with focal frontal lobe or 

medial temporal lobe seizures.

In some focal seizures, the person remains conscious 

but may experience motor, sensory, or psychic 

feelings (for example, intense dejà vu or memories) 

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 and may have movements of just one part of 

the body, for example, just one hand.

In other focal seizures, the person has a change 

in consciousness, which can produce a dreamlike 

experience. The person may display strange, 

repetitious behaviors such as blinks, twitches, 

mouth movements (often like chewing or swallowing, 

or even walking in a circle). These repetitious 

movements are called automatisms. More 

complicated actions, which may seem purposeful, 

can also occur involuntarily. Individuals may also 
10

continue activities they started before the seizure 

began, such as washing dishes in a repetitive, 

unproductive fashion. These seizures usually last 

just a minute or two. 

Some people with focal seizures may experience 

auras – unusual sensations that warn of an 

impending seizure. Auras are usually focal seizures 

without interruption of awareness ( e.g., dejà vu, or 

an unusual abdominal sensation) but some people 

experience a true warning before an actual seizure. 

An individual’s symptoms, and the progression 

of those symptoms, tend to be similar every time. 

Other people with epilepsy report experiencing 

a prodrome, a feeling that a seizure is imminent 

lasting hours or days.

The symptoms of focal seizures can easily be 

confused with other disorders. The strange behavior 

and sensations caused by focal seizures also can 

be mistaken for symptoms of narcolepsy, fainting, 

or even mental illness. Several tests and careful 

monitoring may be needed to make the distinction 

between epilepsy and these other disorders. 

Generalized Seizures

Generalized seizures are a result of abnormal 

neuronal activity that rapidly emerges on both 

sides of the brain. These seizures may cause loss 

of consciousness, falls, or a muscle’s massive 

contractions. The many kinds of generalized 

seizures include:

• Absence seizures may cause the person to appear 

to be staring into space with or without slight 

twitching of the muscles.
11

• 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, which often leads the affected person to fall 

down or drop the head involuntarily. 

• Tonic-clonic seizures cause a combination of 

symptoms, including stiffening of the body and 

repeated jerks of the arms and/or legs as well as 

loss of consciousness.

• Secondary generalized seizures.

Not all seizures can be easily defined as either focal 

or generalized. Some people have seizures that begin 

as focal seizures but then spread to the entire brain. 

Other people may have both types of seizures but 

with no clear pattern. 

Some people recover 

immediately after 

a seizure, while 

others may take 

minutes to hours 

to feel as they did 

before the seizure. 

During this time, 

they may feel tired, 

sleepy, weak, or 

confused. Following 

focal seizures or 

Absence seizures—a type of generalized 

seizure—can cause a person to appear to 

be staring into space.
12

seizures that started from a focus, there may be 

local symptoms related to the function of that focus. 

Certain characteristics of the post-seizure (or postictal) state may help locate the region of the brain 

where the seizure occurred. A classic example is 

called Todd’s paralysis, a temporary weakness in 

the part of the body that was affected depending 

on where in the brain the focal seizure occurred. 

If the focus is in the temporal lobe, post-ictal 

symptoms may include language or behavioral 

disturbances, even psychosis. After a seizure, 

some people may experience headache or pain 

in muscles that contracted.

What are the different kinds of epilepsy?

Just as there are many different kinds of seizures, 

there are many different kinds of epilepsy. 

Hundreds of different epilepsy syndromes – 

disorders characterized by a specific set of 

symptoms that include epilepsy as a prominent 

symptom – have been identified. Some of these 

syndromes appear to be either hereditary or caused 

by de novo mutations. For other syndromes, 

the cause is unknown. Epilepsy syndromes are 

frequently described by their symptoms or by 

where in the brain they originate. 

Absence epilepsy is characterized by repeated 

seizures that cause momentary lapses of 

consciousness. These seizures almost always begin 

in childhood or adolescence and tend to run in 

families, suggesting that they may be at least 

partially due to genetic factors. Individuals may 

show purposeless movements during their seizures, 
13

such as a jerking arm or rapidly blinking eyes, while 

others may have no noticeable symptoms except for 

brief times when they appear to be staring off into 

space. Immediately after a seizure, the person can 

resume whatever he or she was doing. However, 

these seizures may occur so frequently (in some 

cases up to 100 or more a day) that the person 

cannot concentrate in school or other situations. 

Childhood absence epilepsy usually stops when the 

child reaches puberty. Although most children with 

childhood absence epilepsy 

have a good prognosis, there 

may be long-lasting negative 

consequences and some 

children will continue to 

have absence seizures into 

adulthood and/or go on to 

develop other seizure types.

Frontal lobe epilepsy is a common epilepsy 

syndrome that features brief focal seizures that 

may occur in clusters. It can affect the part of the 

brain that controls movement and involves seizures 

that can cause muscle weakness or abnormal, 

uncontrolled movement such as twisting, waving the 

arms or legs, eye deviation to one side, or grimacing, 

and are usually associates with some loss of 

awareness. Seizures usually occur when the person 

is asleep but also may occur while awake. 

Temporal lobe epilepsy, or TLE, is the most common 

epilepsy syndrome with focal seizures. These seizures 

are often associated with auras of nausea, emotions 

(such as déjà vu or fear), or unusual smell or taste. 

The seizure itself is a brief period of impaired 

consciousness which may appear as a staring spell, 

Epilepsy syndromes are 

frequently described by 

their symptoms or by 

where they originate 

in the brain.
14

dream-like state, or repeated automatisms. TLE 

often begins in childhood or teenage years. Research 

has shown that repeated temporal lobe seizures 

are often associated with shrinkage and scarring 

(sclerosis) of the hippocampus. The hippocampus is 

important for memory and learning. It is not clear 

whether localized asymptomatic seizure activity over 

years causes the hippocampal sclerosis.

Neocortical epilepsy is characterized by seizures 

that originate from the brain’s cortex, or outer 

layer. The seizures can be either focal or generalized. 

Symptoms may include unusual sensations, visual 

hallucinations, emotional changes, muscle 

contractions, convulsions, and a variety of other 

symptoms, depending on where in the brain the 

seizures originate. 

There are many other types of epilepsy that begin in 

infancy or childhood. For example, infantile spasms

are clusters of seizures that usually begin before the 

age of 6 months. During these seizures the infant 

may drop their head, jerk an arm, bend at the waist 

and/or cry out. Children with Lennox-Gastaut 

syndrome have several different types of seizures, 

including atonic seizures, which cause sudden falls 

and are also called drop attacks. Seizure onset is 

usually before age four years. This severe form of 

epilepsy can be very difficult to treat effectively. 

Rasmussen’s encephalitis is a progressive form 

of epilepsy in which half the brain shows chronic 

inflammation. 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
15

hippocampus

Hypothalamic hamartoma is a rare form of epilepsy 

that first occurs during childhood and is associated 

with malformations of the hypothalamus at the base 

of the brain. People with hypothalamic hamartoma 

have seizures that resemble laughing or crying. 

Such seizures frequently go unrecognized and are 

difficult to diagnose.

When are seizures not epilepsy?

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 (a lifethreatening condition that can occur in pregnant 

women) are examples of conditions involving 

seizures that may not be associated with epilepsy. 

Regardless of the type of seizure, it’s important 

to inform your doctor when one occurs.

(which features jerklike motions upon 

waking) and LennoxGastaut syndrome 

are usually present 

for life once they 

develop. Children 

with Dravet syndrome 

have seizures that 

start before age one 

and later in infancy 

develop into other 

seizure types.

According to research, repeated 

temporal lobe seizures are often 

associated with shrinkage and 

scarring of the hippocampus—a 

part of the brain important for 

memory and learning.
16

First Seizures

Many people have a single seizure at some point in 

their lives, and it can be provoked or unprovoked, 

meaning that they can occur with or without any 

obvious triggering factor. Unless the person has 

suffered brain damage or there is a family history 

of epilepsy or other neurological abnormalities, the 

majority of single seizures usually are not followed 

by additional seizures. Medical disorders which 

can provoke a seizure include low blood sugar, very 

high blood sugar in diabetics, disturbances in salt 

levels in the blood (sodium, calcium, magnesium), 

eclampsia during or after pregnancy, impaired 

function of the kidneys, or impaired function of the 

liver. Sleep deprivation, missing meals, or stress 

may serve as seizure triggers in susceptible people.

Many people with a first seizure will never have a 

second seizure, and physicians often counsel against 

starting antiseizure drugs at this point. In some 

cases where additional epilepsy risk factors are 

present, drug treatment after the first seizure may 

help prevent future seizures. Evidence suggests that 

it may be beneficial to begin antiseizure medication 

once a person has had a second unprovoked 

seizure, as the chance of future seizures increases 

significantly after this occurs. A person with a preexisting brain problem, for example, a prior stroke 

or traumatic brain injury, will have a higher risk 

of experiencing a second seizure. In general, the 

decision to start antiseizure medication is based 

on the doctor’s assessment of many factors that 

influence how likely it is that another seizure will 

occur in that person.
17

In one study that followed individuals for an average 

of 8 years, 33 percent of people had 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 by the end 

of 4 years. Among those with a third unprovoked 

seizure, the risk of a fourth was 76 percent.

Febrile Seizures

Not infrequently a child will have a seizure during 

the course of an illness with a high fever. These 

seizures are called febrile seizures. Antiseizure 

medications following a febrile seizure are 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 low unless 

one of these factors is present. 

Results from a study funded by the National 

Institute of Neurological Disorders and Stroke 

(NINDS) suggested that certain findings using 

diagnostic imaging 

of the hippocampus 

may help identify 

which children 

with prolonged 

febrile seizures are 

subsequently at 

increased risk of 

developing epilepsy. Febrile seizures, which occur in infants and children, 

may arise during the course of an illness with a 

high fever.
18

Researchers also have identified several different 

genes that influence the risks associated with febrile 

seizures in certain families. Studying these genes may 

lead to new understandings of how febrile seizures 

occur and perhaps point to ways of preventing them. 

Nonepileptic Events

An estimated 5 to 20 percent of people diagnosed 

with epilepsy actually have non-epileptic seizures 

(NES), which outwardly resemble epileptic seizures, 

but are not associated with seizure-like electrical 

discharge in the brain. Non-epileptic events may be 

referred to as psychogenic non-epileptic seizures 

or PNES, which do not respond to antiseizure 

drugs. Instead, PNES are often treated by cognitive 

behavioral therapy to decrease stress and improve 

self-awareness.

A history of traumatic events is among the known 

risk factors for PNES. People with PNES should 

be evaluated for underlying psychiatric illness and 

treated appropriately. Two studies together showed a 

reduction in seizures and fewer coexisting symptoms 

following treatment with cognitive behavioral 

therapy. Some people with epilepsy have psychogenic 

seizures in addition to their epileptic seizures. 

Other nonepileptic events may be caused by 

narcolepsy (sudden attacks of sleep), Tourette 

syndrome (repetitive involuntary movements called 

tics), cardiac arrhythmia (irregular heart beat), 

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. 
19

Are there special risks associated with 

the epilepsies?

Although most people with epilepsy lead full, active 

lives, there is an increased risk of death or serious 

disability associated with epilepsy. There may be 

an increased risk of suicidal thoughts or actions 

related to some antiseizure medications that are 

also used to treat mania and bipolar disorder. 

Two life-threatening conditions associated with 

the epilepsies are status epilepticus and sudden 

unexpected death in epilepsy (SUDEP). 

Status Epilepticus

Status epilepticus is a potentially life-threatening 

condition in which a person either has an abnormally 

prolonged seizure or does not fully regain consciousness 

between recurring seizures. Status epilepticus can 

be convulsive (in which outward signs of a seizure 

are observed) or nonconvulsive (which has no 

outward signs and is diagnosed by an abnormal 

EEG). Nonconvulsive status epilepticus may appear 

as a sustained episode of confusion, agitation, loss 

of consciousness, or even coma. 

Any seizure lasting longer than 5 minutes should be 

treated as though it was status epilepticus. There is 

some evidence that 5 minutes is sufficient to damage 

neurons and that seizures are unlikely to end on 

their own, making it necessary to seek medical care 

immediately. 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 
20

recovered if 2 hours had passed before they received 

medication. The mortality rate can be as high as 20 

percent if treatment is not initiated immediately. 

Researchers are trying to shorten the time it takes 

for antiseizure medications to be administered. A 

key challenge has been establishing an intravenous 

(IV) line to deliver injectable antiseizure drugs in 

a person having convulsions. An NINDS-funded 

study on status epilepticus found that when 

paramedics delivered the medication midazolam 

to the muscles using an autoinjector, similar to 

the EpiPen drug delivery system used to treat 

serious allergic reactions, seizures could be stopped 

significantly earlier compared to when paramedics 

took the time to give lorazepam intravenously. 

In addition, drug delivery by autoinjector was 

associated with a lower rate of hospitalization 

compared with IV delivery (see the NINDS news 

story, http://www.ninds.nih.gov/news_and_events/

news_articles/RAMPART_results.htm). 

Results from the RAMPART study showed that drug delivery using an autoinjector 

(similar to the EpiPen) is faster and may be a more effective way to stop status epilepticus.

Sudden Unexpected Death in Epilepsy (SUDEP)

For reasons that are poorly understood, people with 

epilepsy have an increased risk of dying suddenly 

for no discernible reason. Some studies suggest 
21

that each year approximately one case of SUDEP 

occurs for every 1,000 people with the epilepsies. 

For some, this risk can be higher, depending on 

several factors. People with more difficult to control 

seizures tend to have a higher incidence of SUDEP.

SUDEP can occur at any age. Researchers are 

still unsure why SUDEP occurs, although some 

research points to abnormal heart and respiratory 

function due to gene abnormalities (ones which 

cause epilepsy and also affect heart function). 

People with epilepsy may be able to reduce the 

risk of SUDEP by carefully taking all antiseizure 

medication as prescribed. Not taking the prescribed 

dosage of medication on a regular basis may increase 

the risk of SUDEP in individuals with epilepsy, 

especially those who are taking more than one 

medication for their epilepsy. 

How are the epilepsies diagnosed?

A number of tests are used to determine whether a 

person has a form of epilepsy and, if so, what kind 

of seizures the person has. 

Imaging and Monitoring

An electroencephalogram, or EEG, can assess 

whether there are any detectable abnormalities in 

the person’s brain waves and may help to determine 

if antiseizure drugs would be of benefit. This 

most common diagnostic test for epilepsy records 

electrical activity detected by electrodes placed on 

the scalp. Some people who are diagnosed with a 

specific syndrome may have abnormalities in brain 
22

activity, even when they are not experiencing a 

seizure. However, some people continue to show 

normal electrical activity patterns even after they 

have experienced a seizure. These occur if the 

abnormal activity is generated deep in the brain 

where the EEG is unable to detect it. 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 an 

individual’s first seizure. Ideally, EEGs should 

be performed while the person is drowsy as well 

as when he or she is awake because brain activity 

during sleep and drowsiness is often more revealing 

of activity resembling epilepsy. Video monitoring 

may be used in conjunction with EEG to determine 

the nature of a person’s seizures and to rule out 

other disorders such as psychogenic non-epileptic 

seizures, cardiac arrhythmia, or narcolepsy that 

may look like epilepsy. 

A magnetoencephalogram (MEG) detects the 

magnetic signals generated by neurons to help detect 

surface abnormalities in brain activity. MEG can 

Doctors use EEG to detect abnormalities in a person’s brain waves and to determine 

if antiseizure drugs will be beneficial.
23

be used in planning a surgical strategy to remove 

focal areas involved in seizures while minimizing 

interference with brain function. 

The most commonly used brain scans include CT 

(computed tomography), PET (positron emission 

tomography) and MRI (magnetic resonance 

imaging). CT and MRI scans reveal structural 

abnormalities of the brain such as tumors and 

cysts, which may cause seizures. A type of MRI 

called functional MRI (fMRI) can be used to localize 

normal brain activity and detect abnormalities 

in functioning. SPECT (single photon emission 

computed tomography) is sometimes used to locate 

seizure foci in the brain. A modification of SPECT, 

called ictal SPECT, can be very helpful in localizing 

the brain area generating seizures. In a person 

admitted to the hospital for epilepsy monitoring, 

the SPECT blood flow tracer is injected within 30 

seconds of a seizure, then the images of brain blood 

flow at the time of the seizure are compared with 

blood flow images taken in between seizures. The 

seizure onset area shows a high blood flow region 

on the scan. PET scans can be used to identify 

brain regions with lower than normal metabolism, 

a feature of the epileptic focus after the seizure has 

stopped.

Medical History

Taking a detailed medical history, including 

symptoms and duration of the seizures, is still one 

of the best methods available to determine what 

kind of seizures a person has had and to determine 

any form of epilepsy. The medical history should 

include details about any past illnesses or other 
24

any warning experiences. The observers will be 

asked to provide a detailed description of events 

in the timeline they occurred. 

Blood Tests

Blood samples may be taken to screen for metabolic 

or genetic disorders that may be associated with 

the seizures. They also may be used to check for 

underlying health conditions such as infections, 

lead poisoning, anemia, and diabetes that may be 

causing or triggering the seizures. In the emergency 

department it is standard procedure to screen for 

exposure to recreational drugs in anyone with a 

first seizure.

Developmental, Neurological, and 

Behavioral Tests

Tests devised to measure motor abilities, behavior, 

and intellectual ability are often used as a way to 

determine how epilepsy is affecting an individual. 

These tests also can provide clues about what kind 

of epilepsy the person has. 

symptoms a person may 

have had, as well as any 

family history of seizures. 

Since people who have 

suffered a seizure often 

do not remember what 

happened, caregiver 

or other accounts of 

seizures are vital to this 

evaluation. The person 

who experienced the 

seizure is asked about 

Blood samples may be used to screen for 

disorders associated with seizures and to 

check for underlying health conditions.
25

Can the epilepsies be prevented?

At this time there are no medications or other 

therapies that have been shown to prevent epilepsy. 

In some cases, the risk factors that lead to epilepsy 

can be modified. Good prenatal care, including 

treatment of high blood pressure and infections 

during pregnancy, may prevent brain injury in the 

developing fetus that may lead to epilepsy and other 

neurological problems later. Treating cardiovascular 

disease, high blood pressure, and other disorders 

that can affect the brain during adulthood and aging 

also may prevent some cases of epilepsy. Prevention 

or early treatment of infections such as meningitis 

in high-risk populations may also prevent cases of 

epilepsy. Also, the wearing of seatbelts and bicycle 

helmets, and correctly securing children in car 

seats, may avert some cases of epilepsy associated 

with head trauma.

How can epilepsy be treated?

Accurate diagnosis of the type of epilepsy a person 

has is crucial for finding an effective treatment. 

There are many different ways to successfully 

control seizures. Doctors who treat the epilepsies 

come from many different fields of medicine and 

include neurologists, pediatricians, pediatric 

neurologists, internists, and family physicians, 

as well as neurosurgeons. An epileptologist is 

someone who has completed advanced training and 

specializes in treating the epilepsies. 
26

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 once seizures and their 

consequences become established. There are several 

treatment approaches that can be used depending 

on the individual and the type of epilepsy. If 

seizures are not controlled quickly, referral to an 

epileptologist at a specialized epilepsy center should 

be considered, so that careful consideration of 

treatment options, including dietary approaches, 

medication, devices, and surgery, can be performed 

in order to gain optimal seizure treatment. 

Medications

The most common approach to treating the 

epilepsies is to prescribe antiseizure drugs. More 

than 20 different antiseizure medications are 

available today, all with different benefits and side 

effects. Most seizures can be controlled with one 

drug (called monotherapy). Deciding on which drug 

to prescribe, and at what dosage, depends on many 

different factors, including seizure type, lifestyle 

and age, seizure frequency, drug side effects, 

medicines for other conditions, and, for a woman, 

whether she is pregnant or will become pregnant.

It may take several months to determine the best 

drug and dosage. If one treatment is unsuccessful, 

another may work better.

For many people with epilepsy, seizures can 

be controlled with monotherapy at the optimal 

dosage. Combining medications may amplify 

side effects such as fatigue and dizziness, so 
27

doctors usually prescribe just one drug whenever 

possible. Combinations of drugs, however, are still 

sometimes necessary for some forms of epilepsy that 

do not respond to monotherapy.

Seizure Medications

Generic Brand Name (United States)

Carbamazepine Carbatrol, Tegretol

Clobazam Frisium, Onfi

Clonazepam Klonopin

Diazepam Diastat, Diazepam, Valium

Divalproex Sodium Depakote, Depakote ER

Eslicarbazepine Acetate Aptiom

Ezogabine Potiga

Felbamate Felbatol

Gabapentin Neurontin

Lacosimide Vimpat

Lamotrigine Lamictal

Levetiracetam Keppra, Keppra XR

Lorazepam Ativan

Oxcarbazepine Oxtellar, Oxtellar XR, Trileptal

Perampanel Fycompa

Phenobarbital

Phenytoin Dilantin, Phenytek, 

Pregabalin Lyrica

Primidone Mysoline

Rufinamide Banzel

Tiagabine Hydrochloride Gabitril

Topiramate Topamax, Topamax XR

Valproic Acid Depakene

Vigabatrin Sabril
28

When starting any new antiseizure medication, a low 

dosage will usually be prescribed initially followed 

by incrementally higher dosages, sometimes with 

blood-level monitoring, to determine when the 

optimal dosage has been reached. It may take time 

for the dosage to achieve optimal seizure control 

while minimizing side effects. The latter are usually 

worse when first starting a new medicine.

Most side effects of antiseizure drugs are relatively 

minor, such as fatigue, dizziness, or weight 

gain. Antiseizure medications have differing effects 

on mood: some may worsen depression, where 

others may improve depression or stabilize mood. 

However, severe and life-threatening reactions 

such as allergic reactions or damage to the liver or 

bone marrow can occur. Antiseizure medications 

can interact with many other drugs in potentially 

harmful ways. Some antiseizure drugs can cause 

the liver to speed the metabolism of other drugs 

and make the other drugs less effective, as may 

be the case with oral contraceptives. Since people 

can become more sensitive to medications as they 

age, blood levels of medication may need to be 

checked occasionally to see if dosage adjustments 

are necessary. The effectiveness of a medication 

can diminish over time, which can increase the 

risk of seizures. Some citrus fruit and products, in 

particular grapefruit juice, may interfere with the 

breakdown of many drugs, including antiseizure 

medications – causing them to build up in the body, 

which can worsen side effects. 

Some people with epilepsy may be advised to 

discontinue their antiseizure drugs after 2-3 

years have passed without a seizure. Others may 
29

be advised to wait 

for 4 to 5 years. 

Discontinuing 

medication should 

always be done 

with supervision 

of a health care 

professional. It is 

very important to 

continue taking 

antiseizure medication 

for as long as it is prescribed. Discontinuing 

medication too early is one of the major reasons 

people who have been seizure-free start having new 

seizures and can lead to status epilepticus. Some 

evidence also suggests that uncontrolled seizures 

may trigger changes in the brain that will 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 focal 

seizures, and those who continue to have abnormal 

EEG results while on medication. 

Antiseizure medications are the most 

common treatment for epilepsy. There are 

more than 20 different such medications 

available today—all with different benefits 

and side effects.
30

There are specific syndromes in which certain 

antiseizure medications should not be used because 

they may make the seizures worse. For example, 

carbamazepine can worsen epilepsy in children 

diagnosed with Dravet syndrome.

Diet

Dietary approaches and other treatments may 

be more appropriate depending on the age of the 

individual and the type of epilepsy. A high-fat, 

very low carbohydrate ketogenic diet is often 

used to treat medication-resistant epilepsies. 

The diet induces a state known as ketosis, which 

means that the body shifts to breaking down fats 

instead of carbohydrates to survive. A ketogenic 

diet effectively reduces seizures for some people, 

especially children with certain forms of epilepsy. 

Studies have shown that more than 50 percent of 

people who try the ketogenic diet have a greater 

than 50 percent improvement in seizure control 

and 10 percent experience seizure freedom. Some 

children are able to discontinue the ketogenic diet 

after several years and remain seizure-free, but 

this is done with strict supervision and monitoring 

by a physician.

The ketogenic diet is not easy to maintain, as it 

requires strict adherence to a limited range of foods. 

Possible side effects include impaired growth due to 

nutritional deficiency and a buildup of uric acid in 

the blood, which can lead to kidney stones. 

Researchers are looking at modified versions of 

and alternatives to the ketogenic diet. For example, 

studies show promising results for a modified Atkins 

diet and for a low-glycemic-index treatment, both of 
31

which are less restrictive and easier to follow than 

the ketogenic diet, but well-controlled randomized 

controlled trials have yet to assess these approaches. 

Surgery

Evaluation of persons for surgery is generally 

recommended only after focal seizures persist despite 

the person having tried at least two appropriately 

chosen and well-tolerated medications, or if there 

is an identifiable brain lesion (a dysfunctional part 

of the brain) believed to cause the seizures. When 

someone is considered to be a good candidate for 

surgery experts generally agree that it should be 

performed as early as possible. 

Surgical evaluation takes into account the seizure 

type, the brain region involved, and the importance 

of the area of the brain where seizures originate 

(called the focus) for everyday behavior. Prior to 

surgery, individuals with epilepsy are monitored 

intensively in order to 

pinpoint the exact location 

in the brain where seizures 

begin. Implanted electrodes 

may be used to record activity 

from the surface of the brain, 

which yields more detailed 

information than an external 

scalp EEG. Surgeons usually 

avoid operating in areas of 

the brain that are necessary 

for speech, movement, 

sensation, memory and 

thinking, or other important 

abilities. fMRI can be used 

Surgery can significantly reduce 

or even halt seizures in some 

people, although it involves 

some level of risk.
32

to locate such “eloquent” brain areas involved in 

an individual.

While surgery can significantly reduce or even 

halt seizures for many people, any kind of surgery 

involves some level of risk. Surgery for epilepsy does 

not always successfully reduce seizures and it can 

result in cognitive or personality changes as well as 

physical disability, even in people who are excellent 

candidates for it. Nonetheless, when medications 

fail, several studies have shown that surgery is 

much more likely to make someone seizure-free 

compared to attempts to use other medications. 

Anyone thinking about surgery for epilepsy should 

be assessed at an epilepsy center experienced in 

surgical techniques and should discuss with the 

epilepsy specialists the balance between the risks of 

surgery and desire to become seizure-free.

Even when surgery completely ends a person’s 

seizures, it is important to continue taking 

antiseizure medication for some time. Doctors 

generally recommend continuing medication for at 

least two years after a successful operation to avoid 

recurrence of seizures. 

Surgical procedures for treating epilepsy disorders 

include:

• Surgery to remove a seizure focus involves 

removing the defined area of the brain where 

seizures originate. It is the most common type 

of surgery for epilepsy, which doctors may 

refer to as a lobectomy or lesionectomy, and is 

appropriate only for focal seizures that originate 

in just one area of the brain. In general, people 

have a better chance of becoming seizure-free 
33

after surgery if they have a small, well-defined 

seizure focus. The most common type of lobectomy 

is a temporal lobe resection, which is performed 

for people with medial temporal lobe epilepsy. 

In such individuals one hippocampus (there are 

two, one on each side of the brain) is seen to be 

shrunken and scarred on an MRI scan.

• Multiple subpial transection may be performed 

when seizures originate in part of the brain that 

cannot be removed. It involves making 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.

• Corpus callosotomy, or severing the network 

of neural connections between the right and 

left halves (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 

focal seizures may even worsen after surgery. 

• Hemispherectomy and hemispherotomy involve 

removing half of the brain’s cortex, or outer 

layer. These procedures are used predominantly 

in children who have seizures that do not 

respond to medication because of damage that 

involves only half the brain, as occurs with 

conditions such as Rasmussen’s encephalitis. 

While this type of surgery is very excessive and 

is performed only when other therapies have 

failed, with intense rehabilitation, children 

can recover many abilities.
34

Administration (FDA) in 1997. The vagus nerve 

stimulator is surgically implanted under the skin of 

the chest and is attached to the vagus nerve in the 

lower neck. The 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. Individuals usually cannot stop 

taking epilepsy medication because of the stimulator, 

but they often experience fewer seizures and they 

may be able to reduce the dosage of their medication. 

Responsive stimulation involves the use of an 

implanted device that analyzes brain activity 

patterns to detect a forthcoming seizure. Once 

detected, the device administers an intervention, 

such as electrical stimulation or a fast-acting drug to 

prevent the seizure from occurring. These devices 

also are known as closed-loop systems. NeuroPace, 

one of the first responsive stimulation, closed-loop 

devices, received premarket approval by the FDA in 

late 2013 and is available for adults with refractory 

Devices

Electrical stimulation 

of the brain remains a 

therapeutic strategy of 

interest for people with 

medication-resistant 

forms of epilepsy who 

are not candidates 

for surgery.

The vagus nerve 

stimulation device for 

the treatment of epilepsy 

was approved by the 

U.S. Food and Drug 

Deep brain stimulation, which 

uses mild electrical impulses to 

stimulate the brain, has been tried 

as a treatment for epilepsy in 

several different brain areas.
35

epilepsy (hard to treat epilepsy that does not 

respond well to trials of at least two medicines).

Experimental devices: not approved by the FDA for 

use in the United States (as of March 2015)

• Deep brain stimulation using mild electrical 

impulses has been tried as a treatment for epilepsy 

in several different brain regions. It involves 

surgically implanting an electrode connected to 

an implanted pulse generator – similar to a heart 

pacemaker – to deliver electrical stimulation to 

specific areas in the brain to regulate electrical 

signals in neural circuits. Stimulation of an 

area called the anterior thalamic nucleus has 

been particularly helpful in providing at least 

partial relief from seizures in people who had 

medication-resistant forms of the disorder. 

• A report on trigeminal nerve stimulation (using 

electrical signals to stimulate parts of the trigeminal 

nerve and affected brain regions) showed efficacy 

rates similar to those for vagal nerve stimulation, 

with responder rates hovering around 50 percent. 

(A responder is defined as someone having greater 

than a 50 percent reduction in seizure frequency.) 

Freedom from seizures, although reported, 

remains rare for both methods. At the time 

of this writing, a trigeminal nerve stimulation 

device was available for use in Europe, but it 

had not yet been approved in the United States. 

• Transcutaneous magnetic stimulation involves a 

device being placed outside the head to produce 

a magnetic field to induce an electrical current in 

nearby areas of the brain. It has been shown to 

reduce cortical activity associated with specific 

epilepsy syndromes.
36

What is the impact of the epilepsies on 

daily life?

The majority of people with epilepsy can do the 

same things as people without the disorder and 

have successful and productive lives. In most cases 

it does not affect job choice or performance. Onethird or more of people with epilepsy, however, may 

have cognitive or neuropsychiatric co-concurring 

symptoms that can negatively impact their quality 

of life. Many people with epilepsy are significantly 

helped by available therapies, and some may go 

months or years without having a seizure. However, 

people with treatment-resistant epilepsy can have 

as many as hundreds of seizures a day or they can 

have one seizure a year with sometimes disabling 

consequences. On average, having treatmentresistant epilepsy is associated with an increased 

risk of cognitive impairment, particularly if the 

seizures developed in early childhood. These 

impairments may be related to the underlying 

conditions associated with the epilepsy rather 

than to the epilepsy itself. 

Mental Health and Stigmatization 

Depression is common among people with epilepsy. 

It is estimated that one of every three persons with 

epilepsy will have depression in the course of his 

or her lifetime, often with accompanying symptoms 

of anxiety disorder. In adults, depression and 

anxiety are the two most frequent mental healthrelated diagnoses. In adults, a depression screening 

questionnaire specifically designed for epilepsy helps 

health care professions identify people who need 
37

treatment. Depression 

or anxiety in people with 

epilepsy can be treated 

with counseling or most 

of the same medications 

used in people who don’t 

have epilepsy. People 

with epilepsy should 

not simply accept that 

depression is part of 

having epilepsy and 

should discuss symptoms 

and feelings with health 

care professionals.

Children with epilepsy also have a higher risk of 

developing depression and/or attention deficit 

hyperactivity disorder compared with their peers. 

Behavioral problems may precede the onset of 

seizures in some children.

Children are especially vulnerable to the emotional 

problems caused by ignorance or the lack of knowledge 

among others about epilepsy. This often results in 

stigmatization, bullying, or teasing of a child who 

has epilepsy. Such experiences can lead to behaviors 

of avoidance in school and other social settings. 

Counseling services and support groups can help 

families cope with epilepsy in a positive manner. 

Driving and Recreation

Most states and the District of Columbia will not 

issue a driver’s license to someone with epilepsy 

unless the person can document that she/he has 

been seizure-free for a specific amount of time 

Children with epilepsy have a higher 

risk of developing depression and/or 

attention deficit hyperactivity disorder 

than their peers.
38

(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. Commercial drivers’ licenses 

have additional restrictions. In addition, people 

with epilepsy should take extra care if a job involves 

operation of machinery or vehicles.

The risk of seizures also limits people’s recreational 

choices. Individuals may need to take precautions 

with activities such as climbing, sailing, swimming, 

or working on ladders. Studies 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 improve seizure control in some 

people, but this should be done under a doctor’s 

supervision. The benefits of sports participation 

may outweigh the risks and coaches or other leaders 

can take appropriate safety precautions. Steps 

should be taken to avoid dehydration, overexertion, 

and hypoglycemia, as these problems can increase 

the risk of seizures. 

Education and Employment

By law, people with epilepsy (or disabilities) in the 

United States cannot be denied employment or access 

to any educational, recreational, or other activity 

because of their epilepsy. However, significant barriers 

still exist for people with epilepsy in school and 
39

work. Antiseizure drugs 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. 

Pregnancy and motherhood

Women with epilepsy are often concerned about 

whether they can become pregnant and have a 

healthy child. Epilepsy itself does not interfere 

with the ability to become pregnant. With the right 

planning, supplemental vitamin use, and medication 

adjustments prior to pregnancy, the odds of a 

woman with epilepsy having a healthy pregnancy 

and a healthy child are similar to a woman without 

a chronic medical condition.

Children of parents with epilepsy 

have about 5 percent risk of 

developing the condition at some 

point during life, in comparison 

to about a 1 percent risk in a 

child in the general population. 

However, the risk of developing 

epilepsy increases if a 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 their risk of passing 

on the disorder. 

It is important for pregnant 

women with epilepsy to work with 

a team of health care providers 

to learn about any special risks 

associated with the medicines 

they may be taking.
40

Other potential risks to the developing child of a 

woman with epilepsy or on antiseizure medication 

include increased risk for major congenital 

malformations (also known as birth defects) and 

adverse effects on the developing brain. The types 

of birth defects that have been most commonly 

reported with antiseizure medications include cleft 

lip or cleft palate, heart problems, 

abnormal spinal cord development 

(spina bifida), urogenital defects, 

and limb-skeletal defects. 

Some antiseizure medications, 

particularly valproate, are known 

to increase the risk of having a 

child with birth defects and/or 

neurodevelopmental problems, 

including learning disabilities, 

general intellectual disabilities, and autism spectrum 

disorder. It is important that a woman work with a 

team of providers that includes her neurologist and 

her obstetrician to learn about any special risks 

associated with her epilepsy and the medications she 

may be taking.

Although planned pregnancies are essential to 

ensuring a healthy pregnancy, effective birth control 

is also essential. Some antiseizure medications that 

induce the liver’s metabolic capacity can interfere 

with the effectiveness of hormonal contraceptives 

(e.g., birth control pills, vaginal ring). Women 

who are on these enzyme-inducing antiseizure 

medications and using hormonal contraceptives 

may need to switch to a different kind of birth 

control that is more effective (such as different 

intrauterine devices, progestin implants, or longlasting injections).

Discussion about 

seizure medications 

should occur early 

between the health 

care professional 

and any woman with 

epilepsy who is in her 

childbearing years.
41

Prior to a planned pregnancy, a woman with epilepsy 

should meet with her health care team to reassess 

the current need for antiseizure medications and 

to determine a) the optimal medication to balance 

seizure control and avoid birth defects and b) the 

lowest dose for going into a planned pregnancy. 

Any transitions to either a new medication or 

dosage should be phased in prior to the pregnancy, 

if possible. If a woman’s seizures are controlled 

for the 9 months prior to pregnancy, she is more 

likely to continue to have seizure control during 

pregnancy. For all women with epilepsy during 

pregnancy, approximately 15-25 percent will have 

seizure worsening, but another 15-25 percent will 

have seizure improvement. As a woman’s body 

changes during pregnancy, the dose of seizure 

medication may heed to be increased. For most 

medicines, monthly monitoring of blood levels 

of the antiseizure medicines can help to assure 

continued seizure control. Many of the birth 

defects seen with antiseizure medications occur 

in the first six weeks of pregnancy, often before 

a woman is aware she is pregnant. In addition, 

up to 50 percent of pregnancies in the U.S. are 

unplanned. For these reasons, the discussion 

about the medications should occur early between 

the health care professional and any woman with 

epilepsy who is in her childbearing years.

For all women thinking of becoming pregnant, 

using supplemental folic acid beginning prior to 

conception and continuing the supplement during 

pregnancy is an important way to lower the risk for 

birth defects and developmental delays. Prenatal 

multivitamins should also be used prior to the 
42

beginning of pregnancy. Pregnant women with 

epilepsy should get plenty of sleep and avoid other 

triggers or missed medications to avoid worsening 

of seizures. 

Most pregnant women with epilepsy can deliver with 

the same choices as women without any medical 

complications. During the labor and delivery, it is 

important that the woman be allowed to take her 

same formulations and doses of antiseizure drugs at 

her usual times; it is often helpful for her to bring 

her medications from home. If a seizure does occur 

during labor and delivery, intravenous short-acting 

medications can be given if necessary. It is unusual 

for the newborns of women with epilepsy to 

experience symptoms of withdrawal from the 

mother’s antiseizure medication (unless she is on 

phenobarbital or a standing dose of benzodiazepines), 

but the symptoms resolve quickly and there are 

usually no serious or long-term effects. 

The use of antiseizure medications is considered 

safe for women who choose to breastfeed their 

child. On very rare occasions, the baby may 

become excessively drowsy or feed poorly, and these 

problems should be closely monitored. However, 

experts believe the benefits of breastfeeding 

outweigh the risks except in rare circumstances. 

One large study showed that the children who were 

breastfed by mothers with epilepsy on antiseizure 

medications performed better on learning and 

developmental scales than the babies who were 

not breastfed. It is common for the antiseizure 

medication dosing to be adjusted again in the 

postpartum setting, especially if the dose was 

altered during pregnancy.
43

With the appropriate selection of safe antiseizure 

medicines during pregnancy, use of supplemental 

folic acid, and ideally, with pre-pregnancy planning, 

most women with epilepsy can have a healthy 

pregnancy with good outcomes for themselves and 

their developing child.

What research is being done on the epilepsies 

by the NINDS?

The mission of the National Institute of 

Neurological Disorders and Stroke (NINDS) is 

to seek fundamental knowledge about the brain 

and nervous system and to use the knowledge to 

reduce the burden of neurological disease. The 

NINDS is a component of the National Institutes of 

Health (NIH), the leading supporter of biomedical 

research in the world. The NINDS conducts 

and supports research to better understand and 

diagnose epilepsy, develop new treatments, and 

ultimately, prevent epilepsy. Researchers hope 

to learn the epileptogenesis of these disorders – 

how the epilepsies develop, and how, where, and 

why neurons begin to display the abnormal firing 

patterns that cause epileptic seizures. 

Mechanisms

Researchers are learning more about the 

fundamental processes – known as mechanisms – 

that lead to epileptogenesis. With every mechanism 

that is discovered come new potential targets for 

drug therapies to interrupt the processes that lead 

to the development of epilepsy. Basic science studies 
44 continue to investigate how neurotransmitters 

(chemicals which carry signals from one nerve cell 

to another) interact with brain cells to control nerve 

firing and how non-neuronal cells in the brain 

contribute to seizures. For example, studies are 

focusing on the role of gamma-aminobutyric acid 

(GABA), a key neurotransmitter that inhibits activity 

in the central nervous system. 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 

the role of excitatory neurotransmitters such as 

glutamate. In some cases, the epilepsies may result 

from changes in the ability of supportive brain cells 

called glia to regulate glutamate levels. Researchers 

have found that when astrocytes – a type of glial cell 

that play a critical housekeeping role by removing 

excessive levels of glutamate – are impaired, levels of 

NINDS conducts and supports research on epilepsy to better understand, diagnose, 

treat, and ultimately, prevent the disorder. Researchers hope to learn how the 

epilepsies develop, and how, where, and why brain cells display the abnormal firing 

patterns that cause seizures.
45

glutamate rise excessively in the spaces between brain 

cells, which may contribute to the onset of seizures.

The blood-brain barrier plays in important 

protective role between the circulatory systems and 

the fluid surrounding the brain, as it keeps toxins 

in the blood from reaching the brain. However, this 

protective layer of cells and other components can 

also block potentially beneficial medications from 

reaching the brain. Scientists are looking for ways 

to overcome this barrier for the sake of expanding 

therapeutic options. For example, in one study 

people with drug-resistant epilepsy are receiving 

infusions of neurotransmitter-specific agents directly 

into the epileptic focus.

In another study, researchers are looking at a 

protein that is part of the blood-brain barrier, 

called P-glycoprotein (P-gp). Levels of P-gp are 

higher in people with epilepsy than in people without 

it. These different levels of P-gp may explain why 

some people have seizures that do not respond well 

to medications. NINDS-funded researchers want 

to see if manipulating P-gp levels can affect the 

response to epilepsy medications. 

The brain chemical serotonin helps neurons 

communicate. Previous research suggests that 

serotonin activity may be lower in brain areas where 

seizures start, and that increasing activity at the 

serotonin receptor site on nerve cells may help prevent 

seizures. NINDS-funded researchers are studying 

an experimental medication aimed at increasing the 

activity of serotonin receptors to see if it can reduce 

seizure frequency in people whose seizures are not 

well controlled on antiseizure medication.
46

Research has shown that 

the cell membrane that 

surrounds each neuron 

plays an important role 

in epilepsy because it 

allows neurons to generate 

electrical impulses. 

Scientists 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 seizures. 

Ongoing research is focused on developing better 

animal models that more closely reflect the 

mechanisms that cause epilepsy in humans so 

that they can be used to more effectively screen 

potential treatments for the epilepsies. 

Improving treatments

The NINDS Anticonvulsant Screening Program 

(ASP) (www.ninds.nih.gov/research/asp) provides 

a free compound screening service to identify 

candidate drugs to treat the epilepsies. The ASP 

annually has screened hundreds of new chemical 

agents from academic, industrial, and government 

participants using a battery of models of potential 

efficacy and side-effect liability. Results are 

compared to those obtained with standard marketed 

antiepileptic drugs. The ASP has played a role in 

Serotonin is a brain chemical that helps neurons 

communicate. Research suggests that serotonin 

activity may be lower in brain areas where seizures 

start, and that increasing serotonin activity may 

help prevent seizures.
47

the identification and development of numerous 

marketed antiseizure drugs, including felbamate, 

topiramate, lacosamide, and retigabine. Current 

efforts emphasize unmet medical needs in epilepsy, 

such as treatments for refractory epilepsies, the 

development of epilepsy in previously unaffected 

individuals, and disease progression. 

NINDS-funded researchers are looking at drug 

combinations that would help boost the effectiveness 

of medication therapy. For example, one trial is 

looking at the ability of an antianxiety medication 

to increase brain activity in specific regions, which 

could in turn decrease epileptic seizures.

Neonatal seizures frequently lead to epilepsy as well 

as to significant cognitive and motor disabilities. 

At the same time, safe and completely effective 

antiseizure medications for these newborns are 

lacking. Current treatment options are generally 

ineffective and have significant side effects. NINDSfunded investigators are working to identify better 

treatment options for neonates and to test them in 

randomized controlled trials.

Researchers continue to engineer technologic 

advances to assist in the diagnosis of the epilepsies 

and to identify the source (focus) of the seizures 

in the brain. For example, electrode arrays that 

are flexible enough to mold to the brain’s complex 

surface provide unprecedented access for recording 

and stimulating brain activity, and possibly provide 

a way to deliver treatment. While these arrays have 

not yet been used in humans, they are a promising 

advance toward expanded options for epilepsy 

diagnosis and treatment.
48

Researchers are striving to make surgery for 

epilepsy safer by minimizing the language deficits 

that can occur afterwards. Using functional 

magnetic resonance imaging (fMRI) as well as other 

imaging technologies, researchers are helping to 

improve preoperative planning by more accurately 

mapping areas of the brain that are important for 

the ability to understand and speak language – 

which will help surgeons to preserve those areas 

during surgery. Doctors also are experimenting with 

brain scans called functional magnetic resonance 

imaging (fMRI), 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. 

Researchers also continue to develop minimallyinvasive approaches to treat an epilepsy focus via 

heat (thermoablation), transcranial ultrasound, or 

high-powered x-rays (stereotactic radiosurgery). 

For example, minimally invasive MRI-guided 

laser surgery is being studied for the treatment 

of the epilepsies associated with tumors such as 

hypothalamic hamartomas and tuberous sclerosis 

complex. The technique involves drilling a very 

small hole in the skull through which a thermal 

laser is inserted to ablate an epileptogenic zone 

under MRI-guidance.

Genetics

Advances in understanding the human genome 

have spurred continued efforts to identify genes 

responsible for epileptic conditions. NINDS 
49

is a large supporter of research investigating 

genes responsible for epilepsies and disorders of 

human cognition that gain a foothold during early 

brain development. Continued progress in the 

identification of genetic causes of the epilepsies 

could guide the care and medical management of 

individuals and, in the case of heritable mutations, 

will help affected families understand their risks. 

NINDS established its Epilepsy Centers without 

Walls Program in 2010 to address challenges and 

gaps in epilepsy research. The innovative program 

encourages collaborations, including sharing of 

data and resources, between researchers from a 

variety of disciplines and institutions regardless 

of geographic location, that may lead to advances 

in prevention, diagnosis, or treatment of the 

epilepsies and related comorbidities. 

Learning more about the human genome has increased efforts to identify genes 

responsible for epilepsy. Continued progress to identify genetic causes of the 

epilepsies could help affected families understand their risks.
50

Epi4K is an NINDS-funded Epilepsy Center 

without Walls aimed at determining the genetic 

basis of various epilepsies. Epi4K investigators 

are analyzing the genomes of at least 4,000 people 

with well-characterized epilepsies. Through this 

work, researchers have successfully identified 

mutations associated with Dravet syndrome, 

infantile spasms, and Lennox-Gastaut syndrome. 

Most important, these discoveries will give 

researchers the basis for screening agents for 

their potential therapeutic effects.

The discovery of genetic mutations that are 

linked to specific epilepsy syndromes suggests 

the possibility of using gene-directed therapies 

to counter the effects of these mutations. Gene 

therapies remain the subject of many studies 

in animal models of epilepsy, and the number 

of potential approaches continues to expand. 

A common approach in gene therapy research uses 

viruses modified to be harmless to introduce new 

genes into brain cells, which then act as “factories” 

to produce potentially therapeutic proteins.

Cell therapy differs from gene therapy in that 

instead of introducing genetic material, cell 

therapy involves the transplantation of whole 

cells into a brain. In animal studies, for example, 

NINDS-funded researchers have successfully 

controlled seizures in mice by grafting special 

types of neurons that produce the inhibitory 

neurotransmitter GABA into the hippocampus 

region of their brains.
51

SUDEP (sudden unexpected death in epilepsy)

NINDS, non-profit lay and professional 

organizations, and the Centers for Disease Control 

and Prevention are providing significant funding 

toward studies aimed at better understanding 

SUDEP risk factors and mechanisms, which may 

point the way toward developing strategies for 

screening and prevention. 

Early studies have described certain EEG patterns 

that may help identify people at elevated risk for 

SUDEP. Several devices in the early stages of 

development aim to provide a warning when 

a seizure has the potential to put someone at 

risk for SUDEP.

A second NINDS-funded Epilepsy Center without 

Walls project – the Center for SUDEP Research – 

is now underway and includes some of the world’s 

foremost experts on SUDEP. The group will 

investigate potential causes of SUDEP, elucidate 

signs or symptoms that might make one more 

susceptible to SUDEP, and identify biological 

processes that may be targets for preventing SUDEP.

How can I help research on the epilepsies?

There are many ways that people with epilepsies and 

their families can help advance research. 

• Pregnant women who are taking antiseizure 

drugs can help researchers learn how these 

drugs affect unborn children by participating 

in the Antiepileptic Drug Pregnancy Registry, 
52

which is maintained by the Genetics and 

Teratology Unit of Massachusetts General 

Hospital. Women who enroll in the registry 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.) 

Information about the registry is available at 

http://www2.massgeneral.org/aed/ or by calling 

1-888-233-2334. Information also is available 

from sites of the NIH-sponsored study, Maternal 

Outcomes and Neurodevelopmental Effects 

of Antiepileptic Drugs (MONEAD): https://

clinicaltrials.gov/ct2/show/NCT01730170.

• Participating in a clinical study is an excellent 

opportunity to help researchers find better 

ways to safely detect, treat, or prevent epilepsy 

and therefore offer hope to people now and in 

the future. NINDS conducts clinical studies on 

the epilepsies at the NIH research campus in 

Bethesda, Maryland, 

and support epilepsy 

studies at medical 

research centers 

throughout the United 

States. But studies 

can be completed only 

if people volunteer 

to participate. By 

participating in 

a clinical study, 

health individuals 

and people living 

with epilepsy can 

Clinical studies help researchers find better 

ways to detect, treat, or prevent disorders such 

as epilepsy. Participation in a clinical study is an 

excellent opportunity to offer hope to people with 

neurological disorders now and in the future.
53

greatly benefit the lives of those affected by 

this disorder. Interested individuals should 

talk with their health care professional 

about clinical studies and help to make the 

difference in improving the quality of life for 

all persons with epilepsy. For information 

about participating in a clinical study at the 

NIH and contact information for each study, 

see http://patientinfo.ninds.nih.gov and search 

for epilepsy. For information about additional 

NINDS-funded clinical studies on epilepsy 

and ways to participate, see http://www.

clinicaltrials.gov and search for “epilepsy 

AND NINDS”. 

• People with epilepsy can help further research 

by making arrangements to donate tissue either 

at the time of surgery for epilepsy, or at the time 

of death. Researchers use the tissue to study 

epilepsy and other disorders so they can better 

understand what causes seizures. Below are some 

brain banks that accept tissue from individuals 

with epilepsy. Each brain bank may have 

different protocols for registering a potential 

donor. Individuals are strongly encouraged to 

contact a brain bank directly to preplan and 

learn what needs to be done ahead of the time of 

tissue donation. 

The NIH NeuroBioBank (https://neurobiobank.

nih.gov/) is an effort by the National Institutes of 

Health to coordinate the network of brain banks 

it supports in the United States. The brain tissue 

and data is collected, evaluated, stored, and made 

available to researchers via a network of brain and 
54

tissue repositories in standardized way for the study 

of neurological, psychiatric and developmental 

disorders, including epilepsy. For a listing of 

participating NIH NeuroBioBank repositories and 

additional brain banks, see https://neurobiobank.

nih.gov/pages/researcher_resources/.

What to do if you see someone having a seizure

• Roll the person on his or her side to prevent 

choking on any fluids or vomit.

• Cushion the person’s head.

• Loosen any tight clothing around the neck.

• Don’t restrict the person from moving or 

wandering 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. Remember, people 

cannot swallow their tongues during a 

seizure or any other time.

• Remove any dangerous objects the person 

might hit or walk into 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.
55

Call 911 if:

• The person is pregnant or has diabetes.

• The seizure happened in water.

• The seizure lasts longer than 5 minutes.

• The person does not begin breathing normally 

or does not regain consciousness after the 

seizure stops.

• Another seizure starts before the person 

regains consciousness.

• The person injures himself or herself during 

the seizure.

• This is a first seizure or you think it might be. 

If in doubt, check to see if the person has a 

medical identification card or jewelry stating 

that they have epilepsy or a seizure disorder. 

After the seizure ends, the person will probably 

be groggy and tired. He or she also may have a 

headache and be confused or embarrassed. Try to 

help the person find a place to rest. If necessary, 

offer to call a taxi, a friend, or a relative to help 

the person get home safely. 
56

Where can I get more information? 

For more information on neurological disorders or 

research programs funded by the National Institute 

of Neurological Disorders and Stroke, contact 

the Institute’s Brain Resources and Information 

Network (BRAIN) at: 

BRAIN

P.O. Box 5801

Bethesda, MD 20824

301-496-5751

800-352-9424

www.ninds.nih.gov

In addition to NINDS, several other NIH institutes 

and centers also support research relevant to 

understanding, treating, or preventing seizures 

and epilepsy. More information on epilepsy and 

seizures research supported by the NINDS and 

other NIH components is available through the 

NIH RePORTER (http://projectreporter.nih.gov), 

a searchable database of current and previously 

funded research, as well as research results and 

publications.

Information also is available from the following 

organizations:

Citizens United for Research in Epilepsy (CURE)

430 W. Erie, Suite 210

Chicago, IL 60654

312-255-1801

800-765-7118

www.CUREepilepsy.org
57

The Charlie Foundation for Ketogenic Therapies

515 Ocean Avenue, Suite 602N

Santa Monica, CA 90402

310-393-2347

www.charliefoundation.org

Epilepsy Foundation

8301 Professional Place East, Suite 200

Landover, MD 20785-2353

301-459-3700 

800-EFA-1000 (332-1000)

www.epilepsy.com

Hope for HH (Hope for Hypothalamic Hamartoma)

P. O. Box 721

Waddell, AZ 85355 

http://hopeforhh.org

Intractable Childhood Epilepsy Alliance

PO Box 365

6360 Shallowford Road

Lewisville, NC 27023

336-946-1570

www.ice-epilepsy.org

LGS Foundation (Lennox-Gastaut Syndrome)

192 Lexington Avenue, Suite 212

New York, NY 10016

718-374-3800

www.lgsfoundation.org

National Organization for Rare Disorders (NORD)

55 Kenosia Avenue

Danbury, CT 06810

203-744-0100 

Voice Mail 800-999-NORD (6673)

www.rarediseases.org
58

RE Children’s Project (Rasmussen’s Encephalitis)

79 Christie Hill Road

Darien, CT 06820

917-971-2977

www.rechildrens.org

Dravet Syndrome Foundation

P.O. Box 16536

West Haven, CT 06516

203-392-1950

www.dravetfoundation.org

Tuberous Sclerosis Alliance

801 Roeder Road, Suite 750

Silver Spring, MD 20910

301-562-9890

800-225-6872

www.tsalliance.org

U.S. National Library of Medicine

National Institutes of Health

8600 Rockville Pike

Bethesda, MD 20894

301-594-5983

888-346-3656

www.nlm.nih.gov
59

Glossary

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 health care professionals, 

medical libraries, patient advocacy organizations, 

or by calling the NINDS Office of Communications 

and Public Liaison. 

absence epilepsy — epilepsy in which the person 

has repeated absence seizures. 

absence seizures — seizures seen in absence 

epilepsy, in which the person experiences a 

momentary loss in consciousness. The person 

may stare into space for several seconds and 

may have some twitching or mild jerking of 

muscles. An older term for absence seizures 

is petit mal seizures. 

atonic seizures — seizures which cause a sudden 

loss of muscle tone, also called drop attacks. 

auras — unusual sensations or movements that 

warn of an impending, more severe seizure. 

These auras are actually simple focal seizures 

in which the person maintains consciousness. 

automatisms — automatic involuntary or 

mechanical actions.

clonic seizures — seizures that cause repeated 

jerking movements of muscles on both sides of 

the body. 
60

convulsions — sudden severe contractions of the 

muscles that may be caused by seizures. 

corpus callosotomy — surgery that severs the 

corpus callosum, or network of neural connections 

between the right and left hemispheres 

déjà vu — a sense that something has happened 

before.

de novo — new, for the first time. 

Dravet syndrome — a type of intractable epilepsy 

that begins in infancy.

drop attacks — seizures that cause sudden falls; 

another term for atonic seizures. 

epilepsy syndromes — disorders with a specific 

set of symptoms that include epilepsy. 

febrile seizures — seizures in infants and children 

that are associated with a high fever. 

focal seizures — seizures that occur in just one 

part of the brain. 

frontal lobe epilepsy — a type of epilepsy that 

originates in the frontal lobe of the brain. It usually 

involves a cluster of short seizures with a sudden 

onset and termination. 

generalized seizures — seizures that result 

from abnormal neuronal activity in many parts 

of the brain. These seizures may cause loss of 

consciousness, falls, or abnormal movements 

such as convulsions. 
61

grand mal seizures — an older term for tonicclonic seizures. 

hemispheres — the right and left halves of the brain. 

hemispherectomy — surgery involving the removal 

or disabling of one hemisphere of the brain.

hemispherotomy — removing half of the brain’s 

outer layer (cortex).

hypothalamic hamartoma — a rare form 

of childhood epilepsy that is associated with 

malformations of the hypothalamus at the base 

of the brain.

infantile spasms — clusters of seizures that usually 

begin before the age of 6 months. During these 

seizures the infant may bend and cry out. 

intractable — hard to treat; about 30 to 40 percent 

of people with epilepsy will continue to experience 

seizures even with the best available treatment. 

juvenile myoclonic epilepsy — a type of epilepsy 

characterized by sudden muscle (myoclonic) jerks 

that usually begins in childhood or adolescence. 

ketogenic diet — a strict diet rich in fats and 

low in carbohydrates that causes the body to 

break down fats instead of carbohydrates 

to survive. 

Lafora disease — a severe, progressive form 

of epilepsy that begins in childhood and has 

been linked to a gene that helps to break down 

carbohydrates. 
62

Lennox-Gastaut syndrome — a type of epilepsy 

that begins in childhood and usually causes several 

different kinds of seizures, including absence 

seizures. 

lesion — damaged or dysfunctional part of the 

brain or other parts of the body. 

lesionectomy — surgical removal of a specific 

brain lesion. 

lobectomy — surgical removal of a lobe of 

the brain. 

monotherapy — treatment with only one 

antiepileptic drug. 

multiple subpial transection — a type of operation 

in which surgeons make a series of cuts in the 

brain that are designed to prevent seizures from 

spreading into other parts of the brain while 

leaving the person’s normal abilities intact. 

myoclonic seizures — seizures that cause sudden 

jerks or twitches, especially in the upper body, 

arms, or legs. 

neocortical epilepsy — epilepsy that originates in 

the brain’s cortex, or outer layer. Seizures can be 

either focal or generalized, and may cause strange 

sensations, hallucinations, or emotional changes. 

nonconvulsive — any type of seizure that does not 

include violent muscle contractions. 
63

nonepileptic seizures — any phenomena that 

look like seizures but do not result from abnormal 

brain activity. Nonepileptic events may include 

psychogenic seizures or symptoms of medical 

conditions such as sleep disorders, Tourette 

syndrome, or cardiac arrhythmia. Pseudoseizure 

is an older term for nonepileptic seizure.

post-ictal — post-seizure.

prodrome — a feeling that a seizure is imminent, 

which may last hours or days prior to the seizure.

progressive myoclonus epilepsy — a type of 

epilepsy that has been linked to an abnormality in 

the gene that codes for a protein called cystatin B. 

This protein regulates enzymes that break down 

other proteins. 

Rasmussen’s encephalitis — a progressive type 

of epilepsy in which half of the brain shows 

continual inflammation. 

responsive stimulation — a form of treatment that 

uses an implanted device to detect a forthcoming 

seizure and administer intervention such as 

electrical stimulation or a fast-acting drug to 

prevent the seizure from occurring.

seizure focus — an area of the brain where 

seizures originate. 

seizure threshold — a term that refers to a 

person’s susceptibility to seizures. 
64

seizure triggers — phenomena that trigger 

seizures in some people. Seizure triggers do not 

cause epilepsy but can lead to first seizures or 

cause breakthrough seizures in people who 

otherwise experience good seizure control 

with their medication. 

status epilepticus — a potentially life-threatening 

condition in which a seizure is abnormally 

prolonged. Although there is no strict definition 

for the time at which a seizure turns into status 

epilepticus, most people agree that any seizure 

lasting longer than 5 minutes should, for practical 

purposes, be treated as though it was status 

epilepticus. Repeated seizures without regaining 

consciousness between the events is also considered 

a form of status epilepticus.

sudden unexpected death in epilepsy (SUDEP) 

— death that occurs suddenly for no discernible 

reason. Epilepsy increases the risk of sudden 

unexplained death about two-fold. 

temporal lobe epilepsy — the most common 

epilepsy syndrome with focal seizures. 

temporal lobe resection — a type of surgery for 

temporal lobe epilepsy in which all or part of the 

affected temporal lobe of the brain is removed. 

tonic seizures — seizures that cause stiffening of 

muscles of the body, generally those in the back, 

legs, and arms. 
65

tonic-clonic seizures — seizures that cause 

a mixture of symptoms, including loss of 

consciousness, stiffening of the body, and 

repeated jerks of the arms and legs. In the 

past these seizures were sometimes referred 

to as grand mal seizures. 

vagus nerve stimulator — a surgically implanted 

device that sends short bursts of electrical energy 

to the brain via the vagus nerve and helps some 

individuals reduce their seizure activity.


Prepared by: 

Office of Communications and Public Liaison 

National Institute of Neurological Disorders and Stroke 

National Institutes of Health 

Bethesda, Maryland 20892

NIH Publication No. 15-156

August 2015

NIH . . . Turning Discovery Into Health