Many epilepsy patients lack the right treatment

Experts warn that all options should be explored before choosing the appropriate solution.

Orlando Sentinel

ORLANDO, Fla. — As a child, Brandi West often found herself in a room at home or school with no idea what she was doing there.

Once, on a class trip to SeaWorld, she temporarily lost vision in her left eye. The strange episodes seemed to increase each year. She was 12 years old when a neurologist gave them a name — epilepsy.

Now 16, the high school junior is among the 2.7 million Americans living with the brain disorder. Doctors say many patients are not getting the specialized treatment they need to gain control of their seizures.

Options that might help — such as brain surgery or an implanted nerve stimulator — are not explored often enough.

The result is that many struggle with uncontrolled seizures.

“Well over 90 percent of epilepsy patients in this country are being treated by their family doctors,” said Dr. Robert Gumnit, president of the National Association of Epilepsy Centers.

“But the rule of thumb is that if your seizures haven’t been controlled within three months by a family doctor and a neurologist in nine months, you should be in the hands of an epilepsy specialist.”

The association’s Web site lists centers that offer comprehensive treatment programs.

Epilepsy is a malfunction in the brain’s normal electrical activity, causing seizures that might manifest themselves as violent convulsions, blank stares and a multitude of variations in between. People can be born with the condition or develop it after head injuries.

About one-third of U.S. patients have uncontrolled seizures that do not respond to medication. Called refractory epilepsy, these cases can be devastating.

By the time Brandi was diagnosed, she was having near-daily seizures.

She stared off blankly, often rubbing her face repeatedly. The episodes usually lasted less than a minute, but afterward, she was exhausted and confused. She would sleep for hours.

“When it’s happening, you don’t know who you are or why you’re there,” she said.

“It’s hard to explain — it’s like I kind of know I’m in a safe place, I know I’m in my living room, but I don’t feel safe.”

Brandi failed to get relief from medication, at one point taking seven different drugs. She eventually quelled her seizures with an implanted device that stimulates a major nerve leading to her brain. About 40,000 American patients have tried the technology, which is called vagus nerve stimulation.

Experts warn that it doesn’t work for everyone and all options should be explored. They include:

UMedication: Drugs are the most common therapy for patients, who sometimes take daunting combinations. They can lead to a range of side effects such as weight gain, fatigue and liver damage. Even so, the majority of patients will get control of their seizures through medication.

UKetogenic diet: A carefully controlled eating plan in which 80 percent of calories are derived from fat. Doctors don’t know why, but the diet has been shown to reduce or eliminate seizures in some patients, particularly children. It should only be carried out under a doctor’s supervision.

USurgery: Patients with certain types of seizures might be cured by surgery to remove the area of the brain involved in the attacks. This is only possible if the seizures arise from a region that can be taken out without affecting critical functions such as speech or vision.

Gumnit said about 1,000 to 3,000 patients are undergoing surgeries every year, but more might benefit.

UVagus nerve stimulation: It is rarely a cure for seizures, but in many patients, nerve stimulation can reduce the frequency and severity of attacks.

The VNS system includes surgery to implant a quarter-size device in the upper chest. This is attached to a long wire that is wrapped around the vagus nerve, a major nerve that runs from the brain stem to many organs.

It’s not meant to replace medication, although many can reduce their dosages.

Side effects may include coughing, a tingling sensation and voice alterations — a kind of hoarseness — when the device is on. Many patients report that the effects dissipate over time, said Dr. Basim Uthman, a University of Florida neurologist among the first to use VNS in the United States.

Uthman said doctors gradually adjust the device until seizure control seems to plateau. A typical setting might be that the device “fires” for 30 seconds, then remains off for five minutes.

At two years after implantation, about 40 percent of patients cut their seizure frequency by at least half, according to Cyberonics, the Houston-based company that makes the device. About 5 percent of VNS patients become seizure-free.

Why does it work? Uthman said no one really knows, but one theory is that the stimulation disrupts the “pre-seizure” activity in the brain, essentially keeping the electrical firestorms from building.

“Studies show that this stimulation leads to increased blood flow in regions of the brain that may be important areas in the circuitry that deals with stopping seizures or propagating seizures,” Uthman said.

The device can be controlled as well. Patients are given small magnets that can be waved over the VNS to ramp up stimulation for those who sense an impending seizure.