EPILEPSY GLOSSARY AND INFORMATION ASSOCIATED WITH THIS NOVEL:
(Not an exhaustive comprehensive data list)

Age at Onset: childhood had been the most prevalent, but in recent decades we see epilepsy commonly developing in the elderly.

This is due to our extended longevity, with its attendant increase in strokes, brain scars, brain tumors, and other abnormalities that irritate brain cells.

Aura: the warning the person perceives that a seizure is starting.

Often it is a mood change, or thought, or memory aberration, perceiving smells/tastes, sensations or movements. Auras generally last just a second or so, but can last many seconds to minutes prior to progressing to the full seizure.

Bathing/Swimming/Athletic Dangers: people suffering from epilepsy should avoid swimming unless someone capable of rescue is present should a seizure occur.

Avoid bathtubs and showers (falling on the drain face down in the shower has resulted in drowning) unless someone is home and the bathroom door is open. Mark Twain’s daughter had epilepsy and she drowned in the tub. Wear protective helmets during biking, skateboarding and other such activities. Always wear seatbelts in vehicles. Mothers with epilepsy, and with newborns, need to use care in holding their infants around bathtubs, hot surfaces, and etc. Athletic participation is to be encouraged so long as a seizure wouldn’t endanger life, and there is proper supervision.

Blank Outs/Staring/Confusion Spells: almost always represents a form of seizure, usually petit mal or complex partial type (see below).

Seizures can be differentiated from normal staring-day dreaming by the difficulty of gaining the person’s attention during a seizure. Additionally, the person with mental “blank outs” due to seizures will not have actual conscious thoughts, but the day-dreamer will. If it is a seizure the person will neither recall what was said, nor be aware of the environment. In order to ascertain that people actually lost contact with their environment, they may need to be challenged and tested by observers since they often deny, and truly are unaware of, any loss of contact.

Chewing/Lip Smacking/Licking/Swallowing and Other Movements: called AUTOMATISMS as they are stereotypical (repeated) automatic actions common in complex partial seizures.

People in the seizure are unaware of performing them. Some people will move around a room, perform simple actions, cross a busy street and may, in other ways, endanger themselves.

Clues to Suspect Epilepsy: persons presenting with their “first” witnessed seizure (see below) may actually have epilepsy (see below), i.e. previous seizures, but be unaware of them.

This is more likely to occur in persons who live/sleep alone. Their only clue may be occasional bed-wetting as an adult and/or awakening to find a bloody pillow/lip/tongue and/or awakening to generalized severe muscle/body aches from convulsive jerking that occurred during sleep. Frequently hallucinating (imagining) foul smells/bad tastes (see below) can be a clue of complex partial seizures (see below) that have been unrecognized.

Complex Partial Seizure (limbic seizure): altered consciousness (not totally alert) with loss of awareness of surroundings, although people may still respond, but slowly, and incompletely (as only looking at people speaking to them, but offering no, or short, and inapprKopriate, responses) with confusion. No recollection of events afterward.

They usually last a few minutes. Preceded by symptoms, such as foul smells and/or tastes (see below), and unusual thoughts/memories, or vocalizing phrases for which they have no memory, as “Oh, God! Oh, God!” or “Help me! Help me!” These are the aura (see above), the warning of an oncoming seizure. They typically originate within the temporal lobe located at the lower sides of the brain; some begin in a frontal lobe. If the abnormal brain pattern (epileptiform discharge) activity then spreads out of the temporal lobe to the entire cerebral cortex (outer layers of the entire brain) resulting in a convulsion, it is diagnosed as a complex partial seizure with secondary generalization. Complex partial seizures are the most prevalent type of seizure.

Convulsion: this term commonly applies to a grand mal seizure.

These are the second most prevalent type of seizure, after complex partial seizures (see above). These seizures are not preceded by an aura (see above), or a warning; the person just blacks out. It involves the entire brain cortex resulting in loss of conscious awareness accompanied by a forceful tightness of the body, called the tonic phase. This is followed by repetitive jerking of the limbs and trunk, known as the clonic phase. Occasionally convulsions are so forceful that spinal vertebrae and other bones can be broken; the lips and tongue may be bitten, although this generally is more frightening than serious. It is not recommended attempting to prevent tongue biting since the biting occurs immediately, and then it is too late to pry the jaws open; if something hard is placed between the person’s clamped jaws, teeth can be broken or the rescuer can be severely bitten. If the tongue is not immediately bitten, it generally will not be during the rest of the seizure. Loss of bladder and/or bowel occurs. Try to keep the person on a side so that excess saliva/vomit can drop clear from the mouth/throat and thus avoid choking. Try to protect the person from striking hard objects while falling/jerking; the convulsion exhausts itself within a few minutes and the person then generally sleeps for several hours. Upon awakening recovery from that convulsive seizure has taken place, although residual headaches are common.

CT/MRI Brain Scans: very useful in evaluating causes of seizures. CT (computerized tomography) scans require radiation exposure like X-rays. MRI (magnetic resonance Imaging) scans do not.

Sometimes one type of scan will provide information on brain/skull/blood vessel structure that is different from what the other scan shows. These scans can show tumors and other growths, infections, strokes, bleeding, normal and abnormal blood vessels, pressure changes within and outside of the brain, loss of brain tissue from aging and diseases, brain deformities, and other pathologies. Occasionally dyes and isotopes are injected intravenously (by IV) during scanning to provide more information and to evaluate brain function.

Diagnosis: mostly made from the medical history. The neurological examination commonly is normal in epilepsy, as is the EEG (see below) part of the examination, because the abnormal brain patterns (the epileptiform discharges [see below]), and other EEG abnormalities, are not always present during the interictal (between seizures) period when most EEGs are done.

Grand mal seizures (convulsions) are readily diagnosed from the person’s history. Petit mal (see below) seizures and complex partial (see above) seizures require astute history-taking and observation of patients to identify these seizure-types in the clinic. Often the family/observers must be taught to watch the suspected epileptic person for suspicious inappropriate confusion or blanking out. The observers are taught to command the person to perform certain actions during that time. They would then report to the physician that the person was confused, failed to perform their commands, and admitted not hearing, or being addressed.

Driving Vehicles: not advised for obvious reasons, endangering themselves, their passengers and the public, if their seizures are not controlled.

But only six of the fifty states have laws mandating physicians of any specialty report persons with epilepsy to the Health Department. Other states recommend these persons assume the responsibility to report themselves. The Health Departments then notify the Department of Motor Vehicles (DMV) that the person may have a condition that could interfere with safe operation of a motor vehicle; the DMV then sends medical forms for physicians to complete regarding the condition. The DMV makes the decision to allow, or cancel, the driving privilege. If canceled, the DMV decides how long the seizure-free period should be; usually six months to twenty-four months with medical observation. Some circumstances favorably influence decisions, such as seizures that may occur only during sleep, i.e. nocturnal epilepsy. Legal, insurance, financial, and moral considerations need to be addressed.

Electroencephalogram (EEG): painless recording of brain activity with wires stuck on the head that are connected to the recording machine while the patient rests on a bed. Abnormal brain electrical patterns, i.e. the epileptiform abnormalities (these are the abnormal brain cell discharges that cause seizures) that are detected in the EEG between seizures (known as the interictal period) are helpful in diagnosing epilepsy.

A normal test indicates that no abnormal electrical patterns, or other changes, were detected from the brain neuron cells’ electrical profile in the cortex during that test period (usually lasting 45-90 minutes). But epilepsy abnormalities are sporadic and are not continuous in most epileptic (see below) patients. Therefore, a normal EEG does not rule out epilepsy and normal EEGs are common in people with epilepsy; multiple testing then can be considered. Occasionally, people suspected of epilepsy are admitted to specialized epilepsy - monitoring wards where they are continuously attached to EEG machines and video - monitored for hours, or days, to improve chances of diagnosing the condition. Ambulatory EEGs can be done as out-patients, also. Flashing strobe lights, heavy breathing (hyperventilation), and falling asleep during the EEG are routine aspects of the test as they tend to stimulate the seizure abnormalities to be produced on the recording. If an EEG is ordered to evaluate for other conditions, and a typical abnormal pattern, i.e. epileptiform abnormality, is found on the EEG, a clinical diagnosis of epilepsy cannot be made if the patient, and observers, deny that any clinical seizure ever occurred.

Epilepsy: a chronic neurological disorder characterized by recurring seizures (see below) which are not provoked by temporary problems in the brain (see "reactive seizures" in Febrile Seizures below); more than one seizure qualifies as epilepsy, even if two are separated in time by years.

The specific abnormality causing the seizures often can not be identified; this epilepsy is known as primary or idiopathic. Acquired, or symptomatic epilepsy, results from identifiable brain abnormalities (often on brain scans; see above), such as brain injuries and brain malformations, strokes, tumors, infections, drugs and toxins, alcohol, hormonal changes (including menstruation, called catamenial epilepsy) and metabolism disorders,. In general, inherited epilepsy is not common. Approximately 1 % of the population is epileptic.

Febrile Convulsions: most commonly occurs in children aged several months up to 5 years. Typically these occur in the beginning of a fever (febrile illness) and they are usually benign, i.e. not associated with any serious cause.

They don’t require anticonvulsant medications, and they don’t recur during that febrile illness. They are reactive seizures, reacting to the fever-induced temporary problem in the brain. If the convulsion happens later in the febrile illness, such as one, or more days after the onset of a continuing fever, or the convulsion happens in older children who have a fever, other causes must be considered. Recurrent febrile seizures could represent epilepsy (see above), requiring on-going anticonvulsant medication prophylaxis (see Treatment below).

Hallucinating Smells/Tastes: common as part of the initial aura (see above) especially in complex partial epilepsy (see above). People will perceive smells, usually foul (classically “burning rubber”) that no one else in their environment can perceive.

If physicians fail to ask for these symptoms in patients suffering their “first” observed seizure or confusion episode (non-neurologist physicians often don’t query these symptoms), patients commonly do not complain of them. Describing any of these symptoms should signal to the physician the strong possibility of a previously unrecognized/hidden epilepsy diagnosis.

Juvenile Myoclonic Epilepsy: these are sudden, quick jerks on both sides of the body beginning in late childhood - early teens.

They can be a single jerk, or be repetitive, usually without loss of awareness, occurring shortly after morning arousal. A common symptom is a child involuntarily “throwing” something, like the breakfast juice glass; it’s like an exaggerated startle reaction. This epilepsy (see above) often changes into generalized convulsions (see above). It is highly responsive to Depakote (see Treatment) medications, but, usually, life-long treatment is required.

Petit Mal Epilepsy (absence): petit mal seizures consist of staring spells with loss of awareness and some eye blinking and/or other slight movements, lasting 5-15 seconds, interrupting speech and thinking, without falling down, up to 20-100 times/day. These seizures are notable for their lack of any warning, and their lack of confusion afterward, i.e., there’s no aura (see above) and no post-seizure confusion (see below).

These patients typically are unaware of having lost awareness of their surroundings. They will commonly ask companions to repeat what was just said. When these seizures are unrecognized, observers consider these people as “ditzy,” or odd, due to their periodic mental dullness. There are specific EEG tests that can diagnose this type of epilepsy (The specific petit mal EEG abnormality is a 3/second spike-wave complex that is provoked by heavy breathing and less commonly by flashing lights during the test). Petit mal is one epilepsy type that can be inherited, yet it occurs far less frequently than complex partial (see above) and grand mal (see Convulsion) seizures. It begins in early childhood, and very commonly ceases, by the late teen years. Why the seizures cease is unknown, but the process, in lay terms, is referred to as “growing out of it.”

Post-Ictal Confusion: this is the groggy/confusion period immediately following convulsions (see above) and complex partial seizures (see above).

It routinely lasts minutes to hours and people commonly will safely fall asleep. Strangers unfamiliar with the diagnosis, and who observe the convulsion and/or the post-ictal sleepiness, typically call for emergency personnel/ambulances. Hospital personnel, learning that a previous epilepsy diagnosis has been made, will discharge the patients home once they are alert.

Psychogenic Seizures/Pseudoseizures: these can resemble true seizures to the observer but they are not; they have a psychological cause, often associated with some underlying, subconscious secondary gain, or with conscious malingering.

Anticonvulsant medications (see Treatment) fail to prevent them, but psychiatric treatment can benefit. Their EEGs (see above) during overt “seizures” remain normal; video filming can be helpful. Pseudoseizures can be very difficult to differentiate from actual epileptic seizures, and they often occur in people who also have true epilepsy (see above).

Psychosocial Adjustment to Epilepsy: leading full and independent lives can be a challenge in epilepsy, but especially in those people who have incomplete seizure control.

Confronting school/employment opportunities, marriage, family and social life, driving, and athletic participation all must be considered. Epilepsy Foundations/Societies, and other support agencies, provide guidance in finding local epilepsy support groups. Here patients share common problems and ideas for living with epilepsy. Counseling can be very helpful.

Seizure (ictus): a sudden temporary uncontrolled disruption of electrical activity of brain cells (neurons) that interfere with normal brain function. Seizures are not a disease; they are the representative expression of the disease causing the seizure.

The site of this abnormal activity determines the form of the seizure. Frontal lobe (the anatomical front of the brain) seizures can cause jerking movements and postural changes, or mood or emotional changes, and speech problems. Occipital lobe (the anatomical back of the brain)seizures can cause visual symptoms as blind spots and flashes. Parietal lobe (the sides of the brain) seizures can cause numbness, tingling, pins and needle feelings as seizure manifestations. Temporal lobe (lower side of brain) seizures can cause emotional or psychological phenomena, fear, and hallucinations. A single seizure occurs in an estimated 8-10% of people for undetermined reasons and never recurs during their lifetimes. Fevers in young children, sleep deprivation (usually more than 36 hours), brief loss of oxygen, alcohol excess, illicit toxic drugs, infections and other substances and illnesses can cause a single seizure as a reaction to that insult to the brain; these are referred to as reactive seizures. A single seizure is not enough to diagnose epilepsy (see above). Epilepsy occurs when one experiences more than one non-reactive seizure, even when they are separated by years.

Simple Partial Seizure: clear consciousness during the seizure.

The person can communicate and remains aware of surroundings with full recollection of events despite seizure-induced jerking, numbness or tingling. It can originate in any lobe of the brain.

Spinal Tap (lumbar puncture): the spinal tap is usually far less unpleasant than patients believe when it is performed by experienced physicians. Ideally it is completed in 15-30 minutes and can be done as an out-patient. It is useful to diagnose central nervous system infections, inflammation, cancers, bleeding, to test for abnormal pressure within the central nervous system, multiple sclerosis, peripheral nerve disease, and other conditions.

Typically, the local anesthetic turns out to be the most uncomfortable part of the procedure as it’s injected within the skin layers which stretch apart; this is perceived as a burning sensation. After that the spinal needle is directed deeper into the space between the spinal vertebrae and into the spinal canal, which is usually painless. Then pressure within the central nervous system is measured, and the cerebrospinal fluid is collected by dripping into test tubes to determine if the red and white cell count, protein level, glucose level, and other measurements are normal; cultures for various types of germs can be done, too. The spinal tap is occasionally performed in epilepsy (see above), especially if fever accompanies the seizure in order to rule out meningitis/encephalitis (inflammation/infection in the central nervous system) causing the seizure. A common side effect from the spinal tap is a headache; it occurs in one-third of patients. It is due to cerebrospinal fluid leaking out into the deep tissues from the tiny hole in the coverings of the spinal canal made by the needle. This fluid supports the brain structures within the skull against gravity. When the fluid leaks out, the brain structures can sink down toward the spinal canal, causing pain when the patient sits or stands up. This headache is relieved when the patient lies down and the brain structures no longer sink. The frequency of this unpleasant, but not serious, side effect is one out of three patients whether they remain lying down after the test for many hours, or if they stand up immediately after the test. This headache usually is self-cured within a few days by healing of the puncture hole. The cerebrospinal fluid is replaced by the body in one-half hour.

Status Epilepticus: this occurs when the seizure (see above) activity continues over more than ten minutes without the person regaining full consciousness.

This is to be considered a serious medical emergency requiring medication, breathing and medical support treatments as quickly as possible to prevent brain damage and serious complications.

Sudden Unexpected Death during Seizures: very rare.

Theories consider certain changes in the regulating centers for breathing and for the heartbeat in the brain. When it happens the person is often found dead in bed with no identifiable cause.

Tongue Swallowing During Seizure: this does not happen.

Treatment: the goal is complete cessation of seizures.

If the most appropriate anticonvulsant (medications to stop seizures) medication is given, and it is prescribed at the “correct” dosage, approximately 50% of people with epilepsy will have complete control without any more seizures as long as the medication is taken as prescribed. The “most appropriate” medication in the “correct” dosage is a trial and error process. Physicians will choose the anticonvulsant best suited, as determined by the epilepsy type, treatment trials, and experience. Among the more commonly prescribed anticonvulsant medications, by brand and generic names, are: Depakote (Divalproex), Dilantin (Phenytoin), Keppra (Levetiracetam), Klonopin (Clonazepam), Lamictal (Lamotrigine), Lyrica (Pregabalin), Mysoline (Primidone), Neurontin (Gabapentin), Phenobarbital, Tegretol (Carbamazepine), Topamax (Topiramate), Trileptal (Oxcarbazepine), Zarontin (Ethosuximide), and Zonegran (Zonisamide). Generally, if seizures continue on that medication, the dosage is increased until seizures are controlled or until side-effects can’t be tolerated. Other anticonvulsants are then added, or substituted. This is the art, and experience, in the practice of medicine. This process can take many months of trial and error. Another 20-30% of epilepsy patients will will gain incomplete seizure control; they may experience an infrequent seizure despite trying many of the current anticonvulsants. Another 20% of people with epilepsy continue to have uncontrolled seizures despite all anticonvulsant trials. Epilepsy surgery can then be considered if appropriate, as determined by seizure type and sophisticated testing. Surgical removal of the seizure-causing abnormality, or focus, in the brain can be very successful with surprisingly normal brain function and seizure cessation, or marked seizure-frequency reduction. The ketogenic diet can be beneficial in patients whose epilepsy is uncontrollable, but it is difficult to follow, requiring a very demanding dietary change.

Treatment Cessation: epilepsy (see above) beginning in the late teens and after that age generally requires life-long treatment with anticonvulsant (see Treatment) medications. The medical profession cannot cure epilepsy.

If people with epilepsy have quick and complete control of their seizure (see above) disorder upon starting medications, if their initial physical examination, EEG (see above), brain scan (see above), and various laboratory blood tests are normal, after two years of being free of seizures, and the patients strongly desire to stop their medications, it is reasonable to consider tapering off the anticonvulsant medications over a few months, after another EEG done at that time is normal. Children often will remain seizure-free following the above scenario; they have “grown out” of their epilepsy, or it has become inactive, for unknown reasons. Adults, whose epilepsy began after their teenage years, frequently will experience a return of seizures within weeks to years after stopping their medications; this is unpredictable. Then they may be convinced that they will need to remain on medications, most likely, for life.

Violent Behavior during Seizures: this is most associated with complex partial seizures (see above). If people midst a complex partial seizure are physically restrained they often will involuntarily strike out.

Planned violent/criminal behavior in the midst of a seizure does not occur in the real world, despite popular novels/movies. The violent response to the restraint is a non-directed, unconscious defense mechanism. They will not recall their outburst after the seizure.

  

 

 

  

 

VALUABLE RESOURCE LINKS:

THE EPILEPSY FOUNDATION

8301 Professional Place

Landover , MD 20785

Phone: 800.332.1000

E-mail: www.epilepsyfoundation.org