New treatments give hope to people with epilepsy
When Chicago interior designer and architect Bobbi Packer started having bouts of unusual behavior — nausea, a blank look in her eyes, babbling in mid-sentence — she dismissed them. She had no idea the episodes were short seizures and a form of epilepsy.
“They only lasted 15 seconds,” she says. “I was very anxious because I was in the process of getting a divorce and selling my house, so I thought it was panic attacks.”
The episodes have stopped. But about eight months later, when Packer was 65, he was diagnosed with a benign brain tumor. After surgery to remove the tumor, the episodes started to occur again.
Packer’s neurologist, Jorge Asconapé, MD, director of the comprehensive epilepsy program at Loyola University Medical Center, said Packer’s seizures originated from an area of his brain that the tumor and surgery had damaged.
Packer, now 73, is one of an estimated 3 million adults and 470,000 children in the United States who suffer from epilepsy – a chronic neurological disorder associated with abnormal electrical activity in the brain. If a person experiences repeated and unpredictable seizures, it is called epilepsy.
For many people with epilepsy, new therapeutic approaches, such as implantable devices, drugs, new surgical options for infants and lifestyle changes, show promise.
Basics of epilepsy
Although epilepsy affects people of all ages, Packer’s seizures are one example. late-onset epilepsy, which occurs in people over 60. This age group is at high risk of developing seizures after a major vascular event, such as a stroke. Young children are also at higher risk due to impaired brain development.
Also, a small number of people develop seizures following a traumatic brain injury, such as a car accident. Seizures can also be the result of a genetic variant. Additionally, some autoimmune diseases involve the central nervous system and are associated with seizures.
Many types of seizures exist, and they don’t always resemble the stereotypical image of a person falling to the ground with jerky movements. Some seizures have movement symptoms, and some don’t. The person may be awake and aware, confused or have a loss of consciousness.
Medication can control seizures in about 70% of people, Asconapé says. But sometimes seizures are resistant to medication, and specialists recommend surgical options. During a resection, surgeons remove a small amount of brain tissue from the area where seizures originated to decrease the frequency and intensity of seizures.
Additionally, surgeons can implant small programmable medical devices, similar to pacemakers, to stimulate the brain with electrical charges to control seizures.
The least invasive is vagus nerve stimulation, which uses a device implanted under the skin in the chest. To reduce seizures, it sends light, regular pulses of electrical energy to the nerve in the neck that leads to the brain. Other options include deep brain stimulation and neurostimulation-based treatments that use devices implanted in the brain or skull.
Ann & Robert H. Lurie Children’s Hospital in Chicago treats approximately 4,000 children with epilepsy each year, from premature infants to young adults.
Medicines help about 70% of children to be seizure-free.
“We usually start the dosage low and come up slowly to avoid potential side effects,” says Joyce Wu, MD, pediatric neurologist and epilepsy program manager at Lurie Children.
It’s important to stop seizures in children as soon as possible, says Wu. Continuing uncontrolled seizures puts children at risk for developmental delays, learning disabilities and behavioral disorders such as ADHD and autism.
Seizures are especially dangerous for babies because seizures and medications can impact their brain development. Specialists are looking to new surgical options, even in the youngest infants.
Lurie Children’s was part of a multinational study in which highly specialized teams performed epilepsy surgery on infants under 3 months old. The results, published in the newspaper Epilepsy in 2021, showed the ultra-early operation resulted in safe and effective seizure control.
A dietitian-supervised ketogenic diet — high in fat and low in protein and carbohydrates — offers a different approach for children whose seizures cannot be controlled with medication.
According to the Epilepsy Foundation, more than half of children on a keto diet have at least 50% fewer seizures, and 10-15% of children are seizure-free. The children continue to take their anticonvulsants during the diet. the effect is not fully understood, but one theory points out that when the body uses fat instead of carbohydrates for energy, it supposedly decreases brain excitability and reduces seizures.
“It works well and sometimes better than medication, especially for children, but it’s hard to maintain for adults,” says Asconapé. “If the individual suddenly breaks the diet and on a whim eats a slice of pizza, they can throw a lot of tantrums.
Doctors generally do not recommend the diet for adults because it is difficult to follow. Instead, Asconapé says, the modified Atkins diet, which doesn’t restrict protein, is easier for adults to follow, but isn’t as effective.
Although epilepsy can have a negative impact on a person’s mental and physical well-being, individuals with epilepsy prevail.
Packer proves it. “At first I was worried about the unpredictability of crises, but for six years I’ve been running my own business and driving,” she says. Because stress is a common trigger for seizures, she focuses on maintaining a healthy lifestyle in addition to taking her medications. “I walk a lot, I meditate and I do yoga, so I’m not anxious,” she said.
Packer also tried different drugs. While they were stopping his seizures, they were causing side effects, including confusion and depression. About a year ago, Packer switched to a new medication that left her seizure-free, with no side effects. “I feel like I’m back to being myself,” she says.
She has accepted her condition and is handling it well. “I don’t keep my seizures a secret,” she says. “My friends know them, and my clients know them too. I feel comfortable because it is what it is.