Talking about Epilepsy

AED (antiepileptic drug)
A seizure-preventing drug. AEDs are carried to the brain through the bloodstream.

Anticonvulsant
Preventing or arresting convulsions; agent that prevents convulsions

Antiepileptic
Preventing seizures; there is no agent that prevents epilepsy.

Aphasia
Defect in or loss of the ability to express oneself using speech, writing, or signs, or to comprehend spoken or written language as a result of injury to or disease of the brain’s speech centers.

Ataxia
An inability to coordinate muscle movement

Aura
A sensation recognized by a patient that precedes or signals the beginning of a seizure. May include uneasiness, déjà vu, sensory illusions (odors, visual illusions or misconceptions, sounds), stomach discomfort, and dizziness.

Automatism
Involuntary, undirected movements during complex partial seizures and atypical absence seizures.

Clustering
Involves repeated seizures that follow immediately upon one another or which happen within hours of each other following periods without seizure activity.

Convulsion
An involuntary muscle contractions common in generalized tonic-clonic seizures.

Cryptogenic
Of unknown origin

Epilepsy
A chronic neurological disorder characterized by recurrent seizures; estimated to affect nearly 2.9 million children and adults in the United States. Like all individuals with disabilities, people with epilepsy dislike labels, such as in “He’s an epileptic.” This dislike can be summed up by the statement, “epilepsy is what I have, not what I am.” The preferred terminology is person with epilepsy or child with epilepsy, rather than epileptic. Use of epileptic as an adjective, as in “epileptic seizures” is appropriate.

Epileptologist
A physician (neurologist) expert in the diagnosis and treatment of epilepsy..

Ictal
Pertaining to, characterized by, or caused by an epileptic seizure.

Ictus
A seizure; a stroke.

Idiopathic
Of unknown origin or cause.

Interictal
The period of time between one seizure and another.

Ketogenic diet
Stringent, high fat, low carbohydrate diet that controls seizures in some children.

Mortality
Death rate; often given as ratio of deaths per 100,000.

Multifocal epilepsy
Epilepsy in which the seizures come from a number of locations in the brain.

Neurologist
A specialist in the diagnosis and treatment of nervous system diseases and disorders such as epilepsy.

Photosensitivity
A reflex epilepsy in which seizures are triggered by flashing lights or patterns (e.g., strobe lights, video games, or flipping and rolling of a television screen).

Polytherapy (syn.: polypharmacy)
The use of two or more antiepileptic medications for control of seizures.

Post-ictal confusion
Temporary incoherence, inability to respond to contact or unfamiliarity with environment which commonly follows tonic-clonic, complex partial and atonic seizures.

Prodromal
Indicating the onset of a disease. In epilepsy, indicating the onset of a seizure.

PNES
A sudden disruptive change in a person’s behavior which resembles epileptic seizures but has no electrophysiological changes in the brain. PNES may be related to physical illness, psychiatric disorder or emotional attacks.

Reflex epilepsy
Rare epilepsy which occurs in response to specific sensory stimulus, including flickering light or patterns, sounds, tastes, smells, movements or sensations of touch.

Refractory
Difficult to treat, unresponsive or of limited response to medication.

Seizure
An abnormal electrical discharge in the brain. Seizures can be related to injury, high fever, substance abuse, metabolic disorders, and other health conditions such as diabetes, and are not always a sign of epilepsy.

Seizure threshold
The point at which a person can no longer tolerate a seizure-provoking stimulus (e.g., babies have a lower seizure threshold for high body temperature than do adults. High fever can trigger febrile

Spikes and waves
The brainwave pattern on an EEG tracing during a seizure.

SUDEP (sudden unexpected death in epilepsy)
A condition in which death occurs without an apparent cause but which is presumed to be related to the person’s epilepsy.

Syndrome
A set of symptoms characterizing a disease, disorder, or condition. An epilepsy syndrome is the complete set of seizure types and symptoms experienced by a patient.

Vagus nerve
A nerve which begins at the brain stem, passes through the cranial cavity past the jugular, to the throat, larynx, lungs, heart, esophagus, stomach and abdomen.

Vagus nerve stimulator (VNS)
A device to reduce severity of seizures through electrical stimulation of the vagus nerve. Device is implanted in the upper left chest with electrodes encircling the vagus nerve. Electrical impulses are sent at set intervals to the brain.

Absence Seizures (Formerly know as petit mal seizures)
Generalized seizures most common in children; a lapse in consciousness with a blank stare that begins and ends within a few seconds. May be accompanied by rapid eye blinking or chewing movements.

Atonic Seizures (also called “drop attacks”  or “drop seizures”)
Can have a focal onset or generalized onset. Part or all of the body may become limp. These seizures typically last less than 15 seconds. People may get injured when they fall. Head protection, such as a helmet or other protective gear, may be needed.

Breakthrough Seizures
Seizures that occur despite drug therapy

Clonic Seizures

Clonic means sustained rhythmical jerking. During a clonic seizure, jerking of the body or parts of the body are the main symptom.

Clustering
Involves repeated seizures that follow immediately upon one another or which happen within hours of each other following periods without seizure activity.

Febrile Seizures
Seizures related to high fever in babies and children, usually under age five. Most children who have a febrile seizure do not develop epilepsy

Generalized Seizure
An epileptic seizure that involves the whole brain.

Focal Onset Impaired Awareness Seizures (formerly know as complex partial seizures)
Usually starts with a blank stare, followed by random activity. Person appears unaware of surroundings, seems dazed and mumbles, is unresponsive, clumsy. When seizure ends, post-ictal confusion often follows, and the person has no memory of what happened during the seizure. This type of seizure activity is localized mainly to one part of the brain.

Focal Seizure
An epileptic seizure that involves one hemisphere of the brain.

Epileptic or Infantile Spasms
Epileptic spasms consist of brief (1-3 second) events of arm, leg and head flexion (arms and legs pull into the body) or extension. Epileptic spasms are seen most commonly in children less than 2 years of age. Spasms typically occur in clusters with events every 5-10 seconds over a 5-10-minute period.

Myoclonic Seizures
Usually generalized seizures causing massive rapid clonic spasms of muscle or group of muscles.

Nocturnal Seizures
Seizures that occur routinely in evening hours.

Focal Onset Aware Seizures (formerly know as simple partial seizures)
Seizure activity begins in one side of the brain. Person is fully awake, alert, and able to recall events during the seizure. Some are “frozen” during the seizure, so they may or may not be able to respond to others during the seizures. Overall, these seizures are brief, usually lasting less than 2 minutes. These seizures often have sensory aspects.

Status Epilepticus
Severe, potentially life-threatening non-stop seizures, not always related to epilepsy; status epilepticus can result from acute brain injury.

Temporal Lobe Seizure
A focal seizure involving the temporal lobe. Symptoms vary but may include visual and auditory hallucinations or distortions, déjà vu, feelings of detachment from surroundings and automatisms. Consciousness may be impaired or lost.

Tonic-clonic Seizures (formerly know as grand mal seizures)
Most conspicuous type of seizure; generalized seizures which usually begin with a sudden cry, fall and rigidity (tonic phase) followed by muscle jerks, shallow breathing or temporarily suspended breathing and change in skin color (clonic phase), possible loss of bladder or bowel control; seizure usually lasts 1-3 minutes, followed by a confusion and fatigue.

Adjunct therapy (syn.: add-on therapy)
Treatment administered in addition to another therapy, as when one medication is taken with another.

Craniotomy
An opening made into the skull for brain mapping and epilepsy surgery.

Depth electrodes
Thin wires placed deep in the brain to detect seizure activity that cannot be recorded from the surface of the brain.

EEG (electroencephalograph)
Apparatus that records, in the form of brain waves, electrical discharge from neurons in the brain through electrodes attached to the scalp.

Corpus callostomy
Severing of nerve fibers that connect the two hemispheres of the brain in order to interrupt the spread of seizures from one side of the brain to the other. (See: surgery for epilepsy.)

Frontal lobe
Located in upper region of the head, behind the forehead; frontal lobe controls decision-making, problem-solving or planning and motor movement. (See Also: lobe, parietal lobe, temporal lobe, occipital lobe.)

Gamma knife surgery (radio surgery)
A form of radiation therapy that uses gamma rays to destroy seizure-causing tissue in the brain.

Focus
Identified area of the brain from which partial seizures arise.

Intractable
Not responding to treatment.

Lobe
Any rounded, projecting part of the anatomy; components of the brain. (See Also: frontal lobe, parietal lobe, temporal lobe, and occipital lobe.)

Lobectomy
The surgical removal of a lobe; surgical removal of all or part of the lobe of the brain bearing abnormal seizure-causing tissue (e.g., temporal lobectomy). (See Also: surgery for epilepsy.)

Monotherapy
Treatment with a single drug.

Magnetic resonance imaging (MRI)
An imaging method using magnets instead of X-rays. Produces detailed pictures of the internal structure of the brain.

MEG (magnetoencephalography)
Records magnetic activity generated by the brain’s electrical activity; helps identify brain areas where seizures begin.

Multiple subpial transection (MST)
Surgery in which shallow parallel cuts are made in the cortex; used to reduce or eliminate seizures that come from critical brain areas that cannot be removed.

Stereotactic surgery
Brain surgery performed with the head held in an immoveable position by a special positioning device.

ingle-photon emission computerized tomography
(SPECT) An imaging technique to measure blood flow in the brain.

Trans cranial magnetic stimulation
An unproven experimental procedure that exposes the brain to a strong magnetic field as a potential treatment for epilepsy.

Wada test (intracarotid sodium amobarbital)
Test that helps locate speech and memory centers, named for creator Dr. J.A. Wada. An injection of amobarbital sedates one side or hemisphere of the brain. Doctors then check speech and memory to determine which side is the dominant area for these crucial brain functions.

Hemispherectomy
Surgical removal of one hemisphere of the brain; with epilepsy, performed almost exclusively in children for whom severely damaged tissue spanning one hemisphere produces uncontrollable seizures. (See Also: surgery for epilepsy.)

Pharmacotherapy
Pharmacology medication therapy.

Subdural
Referring to the area beneath the tough membrane (dura) which forms the outer envelope of the brain; subdural strips or grids are small plastic devices containing electrodes which are placed directly on the brain surface to record brain wave activity.

Video monitoring
Simultaneous video (TV) monitoring and EEG recording of brain waves to help identify the type of seizure that is taking place.

So many misconceptions surround epilepsy that communicators may inadvertently add to the negative image of the disorder merely by choice of language. The following is an effort to call attention to usage of terms that in some manner communicate a negative image of epilepsy.

 “Epileptic”

Like all individuals with disabilities, people with epilepsy dislike labels, such as in “He’s an epileptic.” This dislike can be summed up by the statement, “epilepsy is what I have, not what I am.” The preferred terminology is person with epilepsy or child with epilepsy, rather than epileptic, which can be cumbersome for headlines, something that is, in fact, rarely an issue (see Stereotyping below). Use of epileptic as an adjective, as in “epileptic seizures” is appropriate.

“Fit”

Although the term fit is commonly used by the medical profession in the English-speaking world outside of the U.S., most individuals with epilepsy in the U.S. are particularly sensitive to the description of seizures as fits. The feeling is that this word connotes mental derangement or loss of emotional control. Some associate the word with the symptoms of rabies in animals. Seizures or, in some cases, convulsions, is preferred. (Convulsion is a more specific term that more aptly describes a single type of seizure involving muscle contractions throughout the entire body. Not all epileptic seizures are convulsions. Some seizures may amount to only a momentary stare.

“Control”

Seizures are controlled with medication, persons with epilepsy are not. “Controlled epileptic” is particularly to be avoided as it often gives the impression that the person needs to be restrained from willful, aggressive behavior. The adjective violent as a description of a seizure is also unfortunate because the term implies a threat to others and a force out of control. Actually, there is no danger to anyone from the seizure.

Stereotyping

In the past, stereotyping has created unfounded associations between epilepsy and crime or violence, and between epilepsy and mental incompetence. “Epileptic Charged in Murder” makes as much sense as “Insomniac Charged in Murder,” yet this type of headline is not uncommon.

Persistent Myth

Perhaps the most persistent myth is that a person having a seizure can swallow his tongue. It is not physically possible to swallow your tongue. The tongue, if relaxed, could possibly block the airway. The way to avoid this is to turn the person on her side so the tongue falls away to the side of the mouth.

Lifesaving Acts

Sometimes news of dramatic lifesaving acts on the part of passers-by merely perpetuate the myths surrounding epilepsy first aid. Stories about people who save a life by keeping the person with epilepsy from swallowing his tongue are not only inaccurate, but also damaging. They produce a whole new set of misinformed people. Similarly, mouth-to-mouth resuscitation is hardly ever needed in connection with a seizure. Breathing is naturally depressed until the seizure ends, when it usually begins again without assistance.

“Lesser Seizures”

All seizures are serious. Absence seizures (formerly known as petit mal) may seem less severe than generalized tonic-clonic seizures (formerly known as grand mal), but they’re not. Although tonic-clonic seizures (or convulsions) are more dramatic and expose the person experiencing them to serious injury, a child who has 50–75 absence seizures an hour may suffer more severe consequences from them—such as a severe functional disability—than a  person who has two or three tonic-clonic seizures a year. The parents of the child who has almost debilitating absence seizures will likely—and rightfully—take exception to their child’s condition being referred to a lesser form of epilepsy.