Patient & Family Info on Epilepsy

By: .A. Guberman, M.D., F.R.C.P. (C)Director of Epilepsy Clinic Ottawa General Hospital From: Corel Medical Series - Epilepsy

What is Epilepsy?

Epilepsy is not a disease but a condition of many different causes and a variety of forms.
The term simply means that the patient has a tendency to have recurrent epileptic seizures, usually without any obvious provoking factors.

What is an Epileptic Seizure?

This is an excessive and abnormal electrical discharge of brain cells usually producing an observable change in behavior (e.g., such as jerking movements of the arms and legs) and often impairment or loss of consciousness. A seizure may last from seconds to minutes and rarely longer. When many seizures occur one after the other for a period of hours the term status epilepticus is applied.

What are the Major Seizure Types?

Generalized seizures affect the whole brain at once. The tonic-clonic (or "grand mal") convulsion is the most common type of generalized seizure. Here the patient loses consciousness at the onset and may emit a cry as the body begins to stiffen and the patient falls. The limbs then shake rhythmically before all the muscles finally relax. Cyanosis (a blue color due to poor breathing), tongue-biting and loss of bladder control are common. The patient is usually confused and sleepy afterwards for several minutes to hours.
An absence ("petit mal") seizure is another form of generalized seizure which produces a brief inhibition causing the patient to stare and become abruptly unaware of his surroundings for a period of usually less than 30 seconds. There is a blank facial expression and there may be some rhythmic eye-blinking or subtle muscle jerks but the patient does not fall. Absence seizures are most commonly seen in childhood and may be mistaken for day-dreaming in schoolchildren.
Myoclonic, tonic and atonic seizures are other forms of generalized seizures. During some of these seizures (especially atonic) the patient may fall abruptly as muscle tone is lost without warning, resulting in repeated injuries.
Partial seizures arise from one particular part of the brain although they may spread from the point of origin. The particular manifestation will depend on which part of the brain is affected by the abnormal electrical discharge.
Simple partial seizures do not impair the patient ’ s ability to think or his awareness of his surroundings. They may consist of nothing more than an abnormal sensation (e.g., tingling feeling) in part of the body or a rhythmic jerking of one limb, part of a limb or the face. Rarely more elaborate symptoms occur such as visual hallucinations (e.g., seeing previous memories as if watching a moving film strip), auditory hallucinations (e.g., hearing a piece of music), olfactory hallucinations (e.g., unpleasant odors), feelings of fear, excessive familiarity ("déjà-vu") or unfamiliarity ("jamais-vu"). Complex partial seizures (psychomotor seizures) involve a greater or lesser degree of impaired consciousness and are frequently accompanied by automatisms. The latter are semi-purposeful movements or activities such as lip-smacking, tapping or fidgeting with the fingers or vocalizations such as humming which are repetitive and appear somewhat inappropriate. Rarely the patient may perform more complicated tasks, although usually imperfectly, such as cooking a meal, in an automatic way during a complex partial seizure. The patient has no memory for these events afterwards. Complex partial seizures usually arise from a focus within the temporal lobes of the brain. Frequently a generalized tonic-clonic seizure is preceded by a simple partial seizure which is called the aura. A simple partial seizure may also precede a complex partial seizure. Two or more seizure types may occur in the same patient.
A given seizure type in a particular patient is usually relativvely stereotyped in its manifestations.

How Common is Epilepsy?

About 1 - 2% of the population is affected by epilepsy which means there are approximately one quarter of a million patients in Canada (3.6 - 7.2 million patients in North America ).

Who Develops Epilepsy?

Anybody can have an epileptic seizure under the right circumstances. Each of us inherits a brain seizure threshold which makes us more or less resistant to factors known to precipitate seizures (e.g., electroshock therapy).People with epilepsy usually have suffered some brain damage (often undetectable) from one cause or another which has made them susceptible to have periodic seizures. Unnoticed trauma at birth may have left a small scar on the brain which can show up many years later as epilepsy. A head injury or stroke may also lead to epilepsy as a sequela. A small number of epileptic patients have suffered a major brain injury or are affected by a progressive neurological disease as a cause for their epilepsy. This group of patients usually has other neurological handicaps such as mental retardation or paralysis in addition to epilepsy. Most epileptic patients function perfectly normally between their seizures and when a seizure is not occurring would not be detectable as having epilepsy by those with whom they come in contact. For this reason epilepsy is sometimes called "the hidden illness".

Is Epilepsy Inherited?

Genetic factors play only a minor role in most types of epilepsy. Certain inherited diseases, which are rare, have epilepsy as one of their manifestations. Absence seizures have a tendency to run in families. In general a child with an epileptic parent has about a 5% chance of developing epilepsy

How is Epilepsy Diagnosed?

A detailed description of the patient’s spells by a reliable observer may permit a tentative diagnosis. Confirmation is usually obtained by the electroencephalogram (EEG) which may show characteristic abnormalities of electrical activity occurring in between seizures. The EEG represents a written record of minute shifting brain potentials from the surface of the brain recorded over the scalp. It is a painless procedure without associated risk involving the attachment of wires to the scalp for recording purposes. The EEG may also help with classification of the seizure type and localization of the abnormal part of the brain from which the seizure may be originating. However the EEG may be normal in about 10% of cases on repeated occasions and in these patients reliance is placed on the seizure description. In cases where a patient is having frequent enough spells of an uncertain type, intensive monitoring can be done in an attempt to record and observe one or more of the patient ’ s typical attacks. Specialized EEG techniques (radiotelemetry, which allows the patient to be mobile) and simultaneous video recording are used in order to capture a spell along with its electrical (EEG) manifestations on videotape for analysis. Through this method a clearer picture can frequently be gained of the type of attack, the frequency of attacks and the point of origin in the brain. Other tests such as CT or MRI scanning are frequently done to look for the cause of epilepsy once the diagnosis has been made.

How is Epilepsy Treated?

The goal in treating epilepsy is to render the patient seizure-free with a minimum of side effects from medication. Antiepileptic drugs are required for seizure control in the vast majority of patients. These drugs do not cure the underlying epilepsy but merely control it by suppressing seizures. The achievement of complete long-term seizure control is not possible in every case and can be obtained in some only at the expense of intolerable side effects. It is important for the patient to be aware of the following four powerful arguments for attempting complete seizure-control:· a major seizure may lead to bodily injury;· uncontrolled seizures have the theoretical possibility of causing minor brain damage and affecting functions such as memory;· there is evidence that the more seizures a patient has early in the course of his epilepsy the more difficult seizure-control will be in the future;· uncontrolled seizures may lead to untoward social and vocational consequences such as job dismissal or rejection by others . Anti-epileptic drugs must be taken continuously in order to maintain a steady level of drug in the bloodstream and brain if they are to be effective in preventing seizures. Each drug is effective for certain types of seizures and ineffective for other types of seizures. Phenytoin (DilantinÒ), carbamazepine (TegretolÒ), ethosuximide (ZarontinÒ) and valproic acid (DepakeneÒ or EpivalÒ) are first-line anti-epileptic drugs. Primidone (MysolineÒ), phenobarbital, clobazam (FrisiumÒ) and clonazepam (RivotrilÒ) are used less frequently because they are generally less effective and produce significant sedative effects. Anti-epileptic drugs are not addictive and are used for the specific purpose of suppressing the abnormal brain electrical excitability responsible for the seizures. The level of these drugs in the blood is often measured in order to better adjust the dosage and study how the body absorbs and metabolizes a particular drug. In treating epilepsy it is desirable to use one drug but in difficult cases several drugs may be necessary. When drug treatment of epilepsy is started it may take several months of adjusting dosages and trying different drugs before the optimal effects can be achieved. When a drug is added or its dosage changed it usually takes several days before the body establishes a new steady level of the drug and the effects of the change become evident.

When is Surgery Indicated for Epilepsy?

Certain patients in whom medication has failed to provide seizure control are candidates for surgical treatment. Surgical therapy is a major undertaking usually done at highly specialized centres and requiring a great deal of patient co-operation for the extensive preoperative testing required to determine whether surgery would be of benefit. Most operations involve removal of a portion of one temporal lobe which is giving rise to seizures. Surgery is mainly restricted to those patients whose seizures originate from an identifiable focus in the brain. However some patients with generalized seizures may benefit from surgical section of the corpus callosum - the large band of white matter providing connections between the two hemispheres of the brain. Surgery for epilepsy involves minimal risk and about two-thirds of the cases operated have a marked reduction in seizures.

How Can I Best Help My Physician’s Efforts to Control My Seizures?·

Medication should be taken as prescribed and no changes made without consulting your physician. One of the most common reasons for treatment failure in epilepsy is poor patient compliance (i.e., not taking medications as prescribed).· If a dose is missed then generally it can be made up for by adding it to the following dose. However it is important to try to establish a daily routine for taking your medication. Daily pill counters, available at pharmacies can help you to avoid missed doses.· Always refill prescriptions in time and have an extra "emergency" supply of medicine on hand. Running out of medication or suddenly stopping medication may lead to status epilepticus (repeated closely-spaced seizures) with serious consequences. Before taking other medications, check with your physician about interactions with anti-epileptic drugs. Aspirin, certain antibiotics and anti-inflammatory drugs may produce phenytoin or carbamazepine toxicity through drug interactions. Occasionally birth control pills are rendered ineffective by phenytoin or carbamazepine. It is a good idea to keep a calendar record of any seizures which occur. Their description, timing and any possible drug side effects should also be recorded and the calendar brought each time you see your physician.· It is advisable to avoid excessive sleep deprivation and excessive alcohol use. It is also important to realize that ultimately, while your physician can help with his advice, your actions and attitude toward your epilepsy are probably the most important determinants of seizure control. When undergoing surgery it is important that your physician be consulted to determine how to arrange the doses on the day of the surgery. Your surgeon and anesthetist should be informed of your epilepsy and medication. Drugs may have to be changed prior to a pregnancy since most anti-epileptics have been implicated in increasing the risk of congenital malformations (usually minor) in the fetus. Doses may also have to be increased in the latter stages of pregnancy since there is a tendency for blood levels to fall. It is therefore a good idea to consult your neurologist and gynecologist to discuss family planning. When there is too much drug in the system, symptoms of toxicity occur which are basically similar for the anticonvulsants. Most common are dizziness, blurred or double vision, drowsiness and inco-ordination. Consult your physician if you experience these symptoms. Generic preparations may at times be substituted for popular brand names with your physician ' s approval. However the body may handle different preparations of the same drug in a different manner. With most of the anti-epileptic drugs, periodic blood tests to look for toxic effects on the blood and liver are necessary, especially in the early months following institution of these agents. When on phenytoin, careful dental and gum care, as recommended by a dental hygienist or dentist, is necessary to avoid excessive tooth decay and gum problems. Alcohol, in moderation (a few drinks), can be taken by those on anti-epileptic drugs although avoidance of alcohol entirely is preferable.

What Restrictions Does Epilepsy Impose on My Activities?

Epileptic patients should attempt to lead a near-normal life with as few restrictions as possible. The law states that driving is not allowed for one year in Ontario and Quebec following a seizure. Certain exceptions may be made through an appeal mechanism. Bicycling, especially in traffic, should also be avoided by those with frequent seizures. Most sports are permitted and encouraged (including "contact" sports) with the exception of those where a sudden loss of consciousness would be dangerous such as sky-diving, hang-gliding, mountain climbing, horseback riding, scuba diving and rapid downhill skiing . Swimming should always be done with someone nearby at all times. Bathtub drownings have occurred with seizures and therefore showers, sitting on a low stool to avoid falling during a seizure, are recommended. Jobs which entail working on heights, near heavy or dangerous machinery, flames, burners or molten material should be avoided. Certain careers such as a firefighter, airline pilot, bus driver, truck driver, surgeon are inadvisable because of the dangers that a seizure could pose to the patient or others. What Should be Done by Those Around the Patient Having a Major Convulsive Seizure? First aid for a convulsive seizure consists of:· Protecting the patient ’ s head and body from injury.· Removing dentures, excessive secretions and foreign material from the mouth and loosening clothing about the neck once the stiffening and shaking phases of the seizure have passed. Never try to force anything into the mouth once the seizure has begun. Swallowing the tongue is anatomically impossible. Turning the patient on his/her side during or following the seizure. Reassurance of the patient following the seizure but avoiding restraint unless absolutely necessary. It is not necessary to take the patient to hospital after only one or two uncomplicated seizures provided he regains consciousness within several minutes.

What is the Prognosis of Epilepsy?

The prognosis of epilepsy is extremely variable. Under expert medical management, a newly diagnosed epileptic patient with generalized tonic-clonic or partial seizures may expect about an 80% chance of at least a 2-year seizure-free interval in the subsequent five (5) years. About 20% of patients suffer from chronic seizures and are difficult to control. Some cases, especially children with absence seizures have a good chance of "outgrowing" their epilepsy. Complex partial seizures are less likely to disappear with time. Mixed atonic, myoclonic and atypical absence seizures in children (usually with mental retardation) are particularly resistant to treatment.

What Attitudes does Society Hold Towards Epilepsy?

For historical reasons and due largely to ignorance and unfounded fear, epilepsy carries with it a social stigma. Negative attitudes toward epilepsy on the part of employers, associates, family members and even patients themselves may prove more of a handicap than the actual seizures. Local lay epilepsy associations are playing an important role in providing public education, patient information and social support. The first step in the fight against prejudice about epilepsy must always be taken by the patient him/herself. An epileptic patient, who is otherwise healthy, must realize that the fact that his/her brain undergoes a periodic electrical abnormality beyond his/her control, does not in any way diminish one ’ s worth as a person and need not result in major changes in one ’ s aspirations or life-style.

For Further Reading·

Biard, HW. The Child with Convulsions: A Guide for Parents, Teachers, Counselors and Medical Personnel. New York, Grune & Stratton, 1972.· McIntyre, HB. The Primary Care of Seizure Disorders. Boston, Butterworths, 1982.· Scott, D. About Epilepsy. 3rd edition, London, Duckworth Publishers, 1978.· Sullivan, MW. Living with Epilepsy. New York, Nellen Publishers, 1978