Living with epilepsy

The Orlando Sentinel (MCT) - Aquil McSwain was working late into the night at a recording studio when he decided to sleep there. He awoke to find a team of emergency technicians surrounding him.

He had suffered a seizure, they said, and one of the other musicians called an ambulance.

McSwain was 24 and had never had a seizure before, so he refused to go to the hospital. But a few months later, the Orlando, Fla., man had another seizure. He was asleep at home _ and once again, awakened to find an ambulance crew standing over him. This time, he went to the hospital and ended up with a hospital bill for thousands of dollars.

McSwain, who was juggling college and a job as a forklift operator, didn't have health insurance or the money to pay that bill. But the hospital staff did him a favor: They saved him from future whopping bills by referring him to the Epilepsy Association of Central Florida, a little-known nonprofit that teaches epilepsy patients how to manage their care _ and keeps them out of hospital emergency rooms.

The association, which is part of a network of nonprofit epilepsy centers in Florida, helps about 500 patients each month, most of whom are low-income and without health insurance and those whose health insurance doesn't cover epilepsy because it was a pre-existing condition.

At the association, they receive medical care, access to low-cost drugs and even counseling for dealing with a condition that's often misunderstood.

For McSwain, it was a godsend. Like many people who are diagnosed with epilepsy as adults, he was depressed by the prospect of taking anti-seizure medication for the rest of his life. He was down about losing his driver's license. And because he now had a history of seizures, he lost his job as a forklift operator. But at the epilepsy association, his case manager helped him through that rocky phase.

Today, McSwain, now 32, is happily married with three kids and is starting a video-production business with a friend. He's also taking his medication regularly and goes to the epilepsy association's offices on West Colonial Drive in Orlando for an annual checkup.

"My caseworker is more than just a caseworker," said McSwain, who visits her every three months. "She's a friend. She really helped me get through this."

At the Orlando office, area neurologists volunteer their services to see patients at the in-house clinic. Patients pay for the services based on their income, but many pay nothing or as little as $40 for a checkup that would cost more than $200 at a doctor's office.

In addition, the association's case managers help low-income epilepsy patients navigate the paperwork to get medications for free or low cost. The association also negotiates reduced prices for blood tests, MRIs and EEGs from local laboratories.

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For patients who require medications that can cost up to $2,000 a month, that's a significant benefit.

"The majority of our patients pay nothing or 17 cents on the dollar," Carmen says. The association, like other epilepsy service groups scattered throughout Florida, receives some state funding _ which has been cut significantly this year _ and also raises money through fundraising.

But the nonprofit's approach saves money _ not just for patients, but for taxpayers and hospitals, who end up subsidizing the cost of emergency-room visits and hospital stays for low-income epilepsy patients.

For instance, the average cost of an emergency room visit in Florida is about $1,800, according to the Agency for Health Care Administration. But if the doctors admit the patient and run more tests, the costs can skyrocket. The average cost for a hospital admission exceeds $20,000, according to AHCA.

Conversely, the Epilepsy Association of Central Florida spends an average of $584 to treat a patient for one year, Carmen said. That figure includes doctor visits and tests, but does not include the cost of medication.

The organization's clients have been taught that they don't need to go to the emergency room after a routine seizure. Instead, patients call their caseworker afterward to discuss the length of the seizure and if there was anything different about it.

They've learned that if they have a seizure, it's not a medical emergency," says Carmen. And since most of the association's patients developed epilepsy later in life, they have to be educated about the condition and how to take care of themselves.

Groups such as the epilepsy association are invaluable, particularly for low-income epilepsy patients, says Dr. Paul Carney, a neurologist and epilepsy specialist at the University of Florida College of Medicine.

"A lot of these patients don't necessarily have routine care or follow-up, so they wind up in the ER or they don't seek care at all," Carney said. "So having that support group is critical to a lot of things _ not only to keeping out of the emergency room, but to keeping them compliant, meaning they're taking their meds and not running out."

Many epilepsy patients are frustrated at the public reaction to a seizure _ to automatically dial 911 and call an ambulance.

For Vincent Augeri, who experienced his first seizure in 1974, that's annoying and expensive. Augeri, who works as a stagehand setting up convention displays, has warned his friends and co-workers not to call an ambulance for him if he has a seizure.

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"There have been several times when I had a mild blackout and somebody called 911. The next thing you know, I'm in an ambulance and they're taking me to the hospital," says Augeri, now 56. "I tell my friends: If you ever call an ambulance when I have a seizure, you're going to pay the bill.' I understand that people get scared, but my seizures usually last about five seconds. And I don't need to go to the hospital."

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MORE INFORMATION

What is epilepsy?

Epilepsy is a disorder of the brain that briefly interrupts the normal electrical activity of the brain _ which results in seizures.

What causes epilepsy?

Damage to the central nervous system before or during birth or defects in the brain that may be present at birth can cause epilepsy in babies. However, children and adults can develop epilepsy from head injuries. (Bike injuries are a common cause of epilepsy in children, while head injuries from car crashes are a common cause in adults.) Alcohol and drug abuse can also cause seizures and epilepsy, as can measles and encephalitis, tumors and circulatory disease.

What kind of seizures are there?

Partial seizures occur in just one part of the brain, affecting whatever physical or mental activity that area controls. For instance, during a partial seizure, the patient may lose control of an arm or leg.

Generalized seizures occur in large areas of the brain. There are several types, including the grand mal seizure _ in which the person loses consciousness, muscles go rigid and the extremities begin jerking _ and the petit mal or absence seizure, which often occurs in children and is so brief that it's often not noticed. The child may experience about 10 seconds or less of loss of consciousness _ a seizure so short that the child doesn't usually change position. It may be accompanied by unconscious pursing of the lips.

What should I do when someone has a seizure?

If the person is known to have epilepsy or is wearing a medical ID, it's unlikely that further assistance is needed. However, if you do not know about his or her safety, call for medical attention. A seizure, however, is episodic and will pass. Most seizures last less than five minutes.

When should I call 911?

If a seizure lasts longer than five minutes or if another seizure occurs within 30 minutes.

If the seizure is a result of head or body trauma, injury or acute alcohol or drug ingestion.

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If the person is having a first-time seizure or is not known to have epilepsy.

If the seizure occurs in water.

If the person having the seizure is pregnant, has diabetes, or is injured as a result of the seizure.

SOURCE: Epilepsy Association of Central Florida

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© 2009, The Orlando Sentinel (Fla.).