10 Common Caregiver Questions About Epilepsy

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The seizures that characterize epilepsy can be frightening and confusing at first, for the person with epilepsy and for his or her caregiver. But learning all you can makes the disorder less mysterious and helps you take control.

What is epilepsy?

Epilepsy is a common, chronic disorder caused by surges or disturbances in the electrical functioning of the brain. These surges or disturbances cause seizures, and during these seizures certain actions, movements, thoughts, speech, and emotions can be altered.

What causes this abnormal brain activity?

In the majority of people with epilepsy, the cause is never traced. However, research points to a combination of genetics and such environmental factors as head trauma.

Are there different types of seizures?

There are many different types of seizures, ranging from barely noticeable to severe. Among the most common -- and best known -- are generalized tonic-clonic seizures, formerly called "grand mal." These begin with stiffening of the limbs followed by involuntary jerking of the body. But seizures can present as a wide range of changes in motor and muscle control as well as in mental, behavioral, and emotional states. For instance, a short, unexplainable bout of depression can be a seizure, or it can be the warning of a seizure to come. In some types of seizures, the person who is having them is aware of what's going on; in others, the person is unaware; in still others, there is a loss of consciousness.

If you get one type of seizure, can you also get others?

According to Roger Porter, MD, of the Epilepsy Foundation, most people stick to a specific pattern of seizure activity. "They can have more than one type of seizure within that pattern," says Porter. "But they usually will have the same pattern during the course of the disorder."

Are certain people prone to epilepsy?

Epilepsy affects nearly 3 million people in the United States, and it has no social or economic boundaries.

The number of epilepsy cases among the elderly is climbing as the baby boom generation reaches retirement age. Strokes, Alzheimer's disease, hypothyroidism, pneumonia, and other illnesses sometimes predispose this segment of the population to seizures.

Veterans have an increased risk of developing epilepsy if they have suffered traumatic brain injury.

Is epilepsy curable?

There is no cure for epilepsy yet.

Despite the lack of an outright cure, medications and surgical interventions have increased and improved in the last ten years. There are now 20 choices of antiepileptic drugs (AEDs). Some patients experience a decrease in seizures as a result of using AEDs, while others become seizure-free. Doctors prescribe AEDs based on the patient's seizure type, age, and reaction to side effects.

A less common treatment for adults and children who do not respond to medication is surgery, including removal of part of the brain.

A ketogenic diet, which is high in fats and low in carbohydrates, has been proven to lessen and sometimes eliminate seizures. Since the diet must be strictly controlled, it has been most successful with children. Today, doctors sometimes prescribe another high-fat diet, the Modified Atkins Diet, for the treatment of childhood and adult epilepsy that doesn't respond to medication. These are the only dietary measures proven to reduce and sometimes stop seizures, they're generally used when other methods fail, and they must be supervised by a doctor.

What are the side effects of the medications?

The most common medication side effects are fever, sore throat, weakness, fatigue, lack of appetite, dizziness, and rash. If any persist, see the doctor. More acute reactions are memory loss, changes in emotions, weight gain, and learning difficulties. Some people may be allergic or sensitive to a particular medication and experience liver damage. It's important to regularly check your medication levels with the doctor and report side effects.

How is epilepsy diagnosed?

Diagnosing epilepsy is a multistep process:

Doctors first take a medical history and descriptions of the seizures, followed by a physical exam and blood tests.

EEGs (electroencephalograms) are standard in diagnosing epilepsy and abnormal brain waves. The patient is connected to the EEG monitor with electrodes, and brain waves are recorded.

If necessary, doctors also use CT (computed tomography) scans to see if there are scars or changes in brain mass.

Are there other health risks associated with epilepsy?

People with epilepsy have higher rates of ulcers, migraine, chronic fatigue, and bowel disorders, as well as increased risk for depression and anxiety.

There is an increased risk of death among people with uncontrolled seizures. One in 1,000 deaths of people with epilepsy are labeled SUDEP (sudden unexplained death in epilepsy), meaning the death is not related to an accident, falling, or any other explained epilepsy-related cause. These cases predominate among those with uncontrolled seizures, who take multiple medications. "The goal is to control the seizures," says Porter.

Are there any triggers for seizures?

Seizures do have triggers, and the most common are:

  • Suddenly withdrawing from AEDs or otherwise not taking medication routinely
  • Sleep deprivation
  • Stress
  • Heavy alcohol use as well as alcohol withdrawal
  • Sensitivity to light (seizures can be triggered by flickering televisions or videogames)

Watching out for these triggers is good common sense; if you are the caregiver, following them can make your life less stressful, too.

Patricia Wadsley

Pat Wadsley is a contributing writer for Caring. See full bio