For those with epilepsy, knowledge is best ally

By: BRADLEY J. FIKES - Staff Writer

An estimated 2.7 million Americans ---- nearly one in 100 ---- live with epilepsy. But for most of them, having seizures isn't their biggest problem. It's lack of knowledge among those they encounter, and even among themselves.

With proper treatment, most people with epilepsy can live normal lives. According to the Epilepsy Foundation, a patient advocacy group, treatment can enable 70 percent to go five or more years without a seizure. They are considered to be in remission.

But many who could just get on with their lives don't. Children are harassed by their peers, older adults may isolate themselves for fear of losing control, or fear that employers will think they're not mentally or physically capable of work.

Hundreds of medical professionals and other experts discussed these issues last week at the annual meeting of the American Epilepsy Society, held at the San Diego Convention Center along with the Canadian League Against Epilepsy. But to make a difference, that information can't stay among professionals. It has to reach the general public.

Here's a capsule description: Epilepsy is a family of brain disorders that cause repeated seizures without any external cause. Seizures are sudden, unexpected changes in the brain's electrical activity that can cause alterations in consciousness or muscle activity.

A seizure can be as blatant as falling to the ground in convulsions, or as subtle as a few seconds of blank staring. Or it can be entirely undetectable except to the patient, who feels a sudden surge of fear or euphoria. The seizure's electrical impulses are lighting up the brain's emotional circuitry.

Epilepsy is sometimes caused by brain injuries or infections. In some cases genetic factors are responsible. But in many cases, the exact cause is unknown. Epilepsy occurs in all age groups. It's found in infants and in the previously healthy elderly.

And it can kill. There's even an acronym for it: SUDEP, or sudden unexpected death through epilepsy. The mortality rate among those with epilepsy is two to three times higher than average, and the risk of sudden death 24 times greater, according to a study cited by the American Epilepsy Society.

Social stigma

Lack of understanding can lead to severe consequences. In September, Daniel Beloungea of Michican experienced a convulsive seizure while walking through his neighborhood. Police concluded that Beloungea was resisting them. They held him at gunpoint, struck him with a baton, Tasered him, and took him to jail. Beloungea was forced to plead insanity to gain his release, and was jailed for three weeks in a psychiatric facility for the criminally insane.

Beloungea is one of the unfortunate minority of epilepsy patients whose seizures are not well-controlled. Anti-epilepsy drugs had failed, and he had recently had brain surgery. Walking was part of his rehabilitation program.

The Epilepsy Foundation carries an account of the incident on its Web site at http://tinyurl.com/yzmbjy.

Adrian Egli of San Diego also has continuing difficulty with convulsive seizures. Not yet 40, Egli has been unable to work full time and is soon to go on Social Security disability. His hobby, which he credits with helping him overcome depression, is building structures with Legos.

Egli said he got epilepsy after being struck by a car when he was 5. He went years without a seizure, and was even considered cured. Then he had a convulsive seizure in a ninth-grade class.

"It was the one and only time I lost control of my bladder," Egli said. "I looked underneath my chair and thought, what's this puddle of water?"

Suddenly, students didn't want to be near him. "I felt like a freak," Egli said.

Egli spoke at a meeting-related press conference sponsored by UCB Pharma, a maker of epilepsy drugs. The company is trying to address the stigma of epilepsy by sponsoring a program to place service dogs with those with epilepsy. (See sidebar.)

Research advances

Medication is the first line of treatment for epilepsy. The first anti-epileptic drugs, sedatives called bromides, were introduced in the 19th century. In the early 20th century, phenobarbital and phenytoin (trademarked Dilantin) followed. A long string of other drugs followed. Patients respond differently to these drugs, which come with undesirable side effects such as weight gain or inability to concentrate. The goal is to match the drug to the patient to give the best seizure control with fewest side effects.

From 70 percent to 90 percent of epilepsy cases can be adequately controlled through medication, said Dr. David Bettis, a pediatric neurologist who spoke at the UCB-sponsored event. After a pause in developing drugs from 1978 to 1993, a stream of new drugs has reached the market. In many cases, these drugs are substantially more effective than the old standbys, Bettis said.

For the 10 percent to 30 percent who aren't helped enough by medications, alternatives include a low-carb, high-fat "ketogenic" diet, an implanted "brain pacemaker" that stimulates the vagus nerve, and, as a last resort, surgery.

"That involves finding out if the part of the brain causing the seizures can be removed without making the symptoms worse," Bettis said. "You wouldn't take out part of the brain if that would leave the person paralyzed or unable to speak. It would be better to live with the seizures."

To do successful surgery, doctors must map each patient's brain to determine the location of such vital areas, as well as the location of the epilepsy-causing tissue. Then doctors have to plan a path that reaches the tissue with the least damage to the brain.

EEGs are helpful to brain mapping, but the skull distorts the path the brain waves take, said Dr. Vicente Iragui, a neurologist and director of the UCSD Epilepsy Center. Other mapping tools include fMRI (functional magnetic resonance imaging), which shows brain activity by measuring blood flow, and an exotic technology with the jawbreaking name of magnetoencephalography, or MEG. This technology measures the magnetic fields created by the brain's electrical activity.

The Epilepsy Society's scientific poster session included several studies indicating MEG's usefulness. Iragui agreed that the technology is helpful because the signal isn't distorted, making targeting more accurate. Two San Diego companies, 4D Neuroimaging (formerly Biomagnetic Technologies), and Tristan Technologies, have developed MEGs

A major problem with MEG brain scanning is that the magnetic signals are extremely faint, so the test area must be shielded from stray metal or electrical activity that could override the signal.

Latino outreach

Epilepsy can be contracted from undercooked pork contaminated with parasites. These parasites are especially prevalent in Latin America, Africa and Southwest Asia, Iragui said. This form of epilepsy is seen in immigrants to Southern California from the affected areas, mainly from Central America, Iragui said.

This disease, called neurocystericerosis, occurs when the parasites lodge in the brain. It is the most common cause of epilepsy in developing countries. The parasites destroy part of the brain tissue, which is replaced by calcified cysts as the parasites die. The type of epilepsy depends on where the parasites lodge.

In most cases, patients experience "partial" seizures, taking place in the part of the brain where a parasite has lodged. However, multiple infestations can occur in one brain, Iragui said.

Good sanitation and proper cooking of pork prevent the disease from spreading, said Iragui, a native of Spain, who addressed a workshop at the meeting held in Spanish.

Neurocystericosis can be treated with drugs to kill the parasite while it is alive. Once the parasite has died and epilepsy occurs, the treatment is aimed at controlling the epilepsy, such as with anti-epileptic drugs.

Epilepsy and aging

Elderly people sometimes develop epilepsy because they've had a stroke, brain injury or a disease that affects the brain. But most of the time, the cause is unclear, said Dr. Kevin Kelly of Drexel University College of Medicine. Kelly specializes in research on epilepsy among the aging. He's trying to distinguish the normal consequences of aging from those associated with epilepsy.

The first hurdle is diagnosing the epilepsy, Kelly said. It may not occur to a doctor that epilepsy can develop in a person with no history of the disease. Also, some of the results of seizures, such as falls, could be attributed to the frail condition of some elderly.

"A lot of seniors have lapses of memory, they may have confusion spells, they may have senior moments," Kelly said.

When epilepsy is suspected, patients are sometimes given a single EEG (brain wave) test. Kelly said that's not enough, because it may take multiple brain wave tests, or even video monitoring with EEG to catch the pattern of a seizure.

Cost of care is also a concern, Kelly said. Anti-epileptic drugs can be expensive, and many seniors are taking multiple medications. In some cases, doctors may have to take drug prices into account in prescribing, because a medication that a patient can't afford does no good.

One of those seniors, 77-year-old Kay Burke of Chula Vista, attended the UCB briefing. Burke said her epilepsy was being well-controlled with Keppra, a drug made by UCB. However, she could not afford the $200 monthly cost, which exceeded the coverage limit on her Medicare Part D drug plan.

A UCB representative took her information and said she would see if Burke qualified for a lower-cost rate. Many pharmaceutical companies offer such programs for those with medical needs and a limited ability to pay.

Burke said she was diagnosed with epilepsy fairly recently.

"My children thought I was having strokes," Burke said. "I'd be walking down the street and I'd get pale, blanch, and then I'd have to hold onto something or fall.

"I went to the doctor two years ago, and he just said I had focal seizures, but he didn't say it was epilepsy," Burke said. "I had this fall and was taken to the hospital where they did the EEG, and that's when I found out."

Contact staff writer Bradley J. Fikes at (760) 739-6641 or bfikes@nctimes.com.

About seizures

Seizures differ depending on what parts of the brain are involved. Those affecting motor areas will produce involuntary movements, including apparently purposeful movements. Seizures affecting consciousness or perception will produce sensations such as a smell of burning rubber. They can involve just part of the brain, called "partial" seizures, or "generalized," which involve the entire brain. Combinations of these also occur.

These are the most common kinds of seizures:

Partial seizures:

- Simple partial (focal) seizures involve only one part of the brain. They can cause movement, altered sensations, or a change in heart rate. Consciousness remains intact, although seizure-produced movements may impair the person's ability to respond.

- Complex partial seizures start in the temporal or frontal lobe of the brain as a simple partial seizure, and spread to other parts of the brain that control awareness and consciousness. The person may perform repetitive behavior such as plucking at clothes as if removing lint, or wandering.

- Partial seizures that lead to generalized seizures (see below). Generalized seizures involve the whole brain.

Generalized seizures:

Tonic-clonic (formerly known as grand mal) can cause the person to lose consciousness, stiffen and fall to the ground. Jerking motions follow, along with possible incontinence. The movements should stop in a minute or two, after which the person slowly regains consciousness.

- Absence (abSONCE) seizures put the person on automatic pilot, apparently daydreaming, usually for 10 to 20 seconds. Often, the person will blink repetitively. They are especially common in childhood epilepsy. The person has no memory of the episode, but is alert immediately afterward.

- Myoclonic seizures cause brief muscle spasms.

- Atonic, or "drop" seizures, cause the person to briefly lose muscle strength. If standing, the person will suddenly drop to the floor, possibly resulting in head injury. The person remains conscious.

First Aid:

For tonic-clonic seizures, watch, guard and wait are the most important things you can do.

Watch and make note of what happens during the seizure, including timing the seizure.

Guard against injury. Remove hard or sharp objects that could injure the person. Clear the area around the person so movement is not restrained. Loosen ties or anything else that may obstruct breathing. Gently turn the person on one side. Place something flat and soft, like a folded jacket, under the person's head.

Wait until the seizure ends, which should be within a few minutes. Do not attempt artificial respiration unless the person does not start breathing once the seizure is over.

Be reassuring and offer to call for a cab, friend or relative if the person seems confused or unable to get home unaided.

An ambulance should be called for if the seizure goes on for more than five minutes, has happened in water, or if the person is pregnant, injured or diabetic. Also, if the person has no medical ID, does not regain consciousness or another seizure begins, emergency care is needed.

For non-convulsive seizures:

- Explain to others what is happening. The person may be mistakenly considered to be intoxicated.

- Speak quietly and calmly.

- Guide the person gently away from any danger, such as a steep flight of steps, a busy highway, or a hot stove. Don't grab hold, however, unless some immediate danger threatens. Instinct may make an epileptic struggle or lash out at the person who is trying to hold them.

- Stay with the person until full consciousness returns, and offer help in returning home.

More complete information on first aid for seizures is available from the Epilepsy Foundation at http://tinyurl.com/yngb4y.

SOURCE: Epilepsy Foundation