“Even though it had only been five years, epilepsy had taken away from me my career that meant so much to me.”
Hannah Parke experienced her first epileptic seizure in 2017, although she didn't recognize it as that at the time.
"I was sitting in a park and, all the sudden, I had this extreme out-of-body experience in which I felt like I had some sort of conversation with God," she says. "It was super-surreal. And it lasted for a really long time."
When she returned home, Hannah's now-husband and best friend were there. She doesn't recall seeing them, but they later told her she didn't recognize them.
Similar episodes happened again and again.
"They were either really euphoric or really, really terrifying and they'd knock me out for several hours," she says.
Hannah was 24 at the time. She'd never experienced anything even remotely like what was happening to her now with increasing frequency. Scared and with no other immediate option, Hannah turned to psychiatric group therapy until, after a month, she was able to see a psychiatrist one-on-one. The psychiatrist said her experiences sounded like focal seizures, which occur when nerve cells in the brain send out sudden, uncontrolled electrical signals.
The suggestion sent Hannah reeling. Of all the things she thought might be happening to her, seizures were not one of them.
The psychiatrist referred Hannah to a local neurologist, who diagnosed her with temporal lobe epilepsy — named for the region of the brain where the seizures originate — without any testing and promptly started her on medication to lessen the frequency and severity of the seizures.
By the time Hannah found her way to James J. Gugger Jr., MD, PharmD, an epileptologist at the Comprehensive Epilepsy Center and assistant professor of neurology at the Perelman School of Medicine, she was taking multiple antiseizure medications, as well as others that were intended to offset their side effects. None of it had much of an effect.
"That's pretty common," Dr. Gugger says. "For about a third of people with epilepsy, the medication doesn't stop their seizures."
He tried prescribing other drugs. And when they didn't work, he tried others. Hannah continued to have seizures.
A new wrinkle arises
Hannah struggled with the side effects of much of the medication she was prescribed, which can be significant. The frequency of her seizures, she says, was making her paranoid about when and where the next one would occur. But on certain antiseizure medications, like Keppra, she felt like an entirely different person.
"I'm a very happy-go-lucky person, but it made me so mad all the time. And very irritable. I cried all the time," she says. "But it was the only thing that was even remotely working for me."
When a patient doesn't respond to medication, the next step is to admit them for testing to the Epilepsy Monitoring Unit at the Hospital of the University of Pennsylvania. During the test an EEG records the electrical activity of their brain during a seizure. The painless test can help neurologists determine the precise nature of the seizures and where exactly they're originating.
"We also videotape the patient," Dr. Gugger says. "So we can see what both they and their brainwaves look like during a seizure."
However, Hannah's EEG didn't yield clear evidence of seizures.
Hannah was concerned it would raise doubts about her condition, but Dr. Gugger didn't waver in his commitment to helping her.
"It was clear she was having a really hard time because of the seizures," he says. "They were getting in the way of her career and personal life."
In January 2022, Hannah was readmitted to the Epilepsy Monitoring Unit, this time for an SEEG. Neurosurgeon H. Isaac Chen, MD, made 28 small incisions in Hannah's head through which he placed electrodes in targeted areas of her brain. The data from each electrode was then closely monitored until the source of the seizures could be pinpointed.
Seventeen days elapsed before Hannah finally had a seizure substantial enough to provide meaningful feedback.
"It was just a fantastic feeling to have them finally find it," she says. "Some people struggle for decades before their epilepsy is definitively diagnosed."
Her elation passed quickly. There was a new wrinkle: Hannah's seizures were occurring on both sides of her brain, in a region of the brain called the hippocampus.
"The surgeries that are most likely to cure epilepsy are the ones where we remove part of one side of the brain," Dr. Gugger says. "We can't remove tissue from both sides of the brain."
Making a difficult decision
Dr. Gugger proposed another option: the Responsive Neurostimulation System®, an implant that continuously monitors brain activity. It records and reports EEG data, which enables doctors to program the device to recognize the person's unique seizure pattern and automatically prevent them before they start by sending brief pulses to disrupt unusual activity.
The RNS System is not a cure for epilepsy, but it can dramatically reduce the number of seizures a person experiences.
Implanting the RNS System is a major surgery. Hannah's was placed over the course of two surgeries in July 2022. The device is comprised of a small battery, generator, and two wires with electrodes at the end of them, none of which is visible once it's placed. In the first surgery, an electrode was placed on each of Hannah's hippocampi, which sit at the center of the brain. She says she felt disoriented for a few days after the procedure and was ecstatic when the sensation passed and she felt like her normal self again.
In the second procedure, which took place two weeks after the first, the electrodes and wires were attached to the generator and battery. Hannah, who is a professional actress, says she was onstage six days later, her head covered by a bandanna.
"I don't know what I was thinking, other than I was trying to get back to normality," she says.
While many people find themselves in Hannah's position — suffering from epileptic seizures and finding little relief from medication — few opt for surgery, Dr. Gugger says.
"For many, it's a very scary prospect," he says. "There's a lot of testing that needs to be done beforehand. And then there's the surgery itself, which is obviously daunting."
Hannah says she was compelled to get the implant because it was potentially a means to an end.
"I was at my wit's end," she says. "Even though it had only been five years, epilepsy had taken away from me my career that meant so much to me. The surgery, I thought, would bring me closer to getting back to doing what I've spent my whole life working toward."
Still, it wasn't a straightforward decision. She worried right up until she was moved into the OR for the first surgery that she would not be the same person.
"As much as I play a lot of this off with humor, epilepsy has been really, really rough. No one should have to go through something like this," she says. "At the same time, I know that people are. I can say to them now, 'Put your head down and push through because there's an option for us.'"
Encouraged about her future
Buoyed by her husband and mother's moral support and her own determination, Hannah says she "hit the ground running" during her recovery. Less than two months after her second surgery, she was back onstage full time.
Today, she's shed much of the worry that had come to define her life over the last several years.
"I feel a lot, a lot better," she says. "I still have seizures and auras, but the RNS is definitely working."
The neurostimulation device received FDA approval about a decade ago, so its long-term effectiveness is unknown. But Dr. Gugger says it's become clear the RNS system improves with time through its initial years, at least.
"We expect the most gains not in the first year but over the course of several years," he says.
In the meantime, he's taken Hannah off all the epilepsy medication she was on before the RNS system was implanted with the exception of a low dosage of Keppra.
Almost as soon as she experienced her first seizure, Hannah says her memory began to deteriorate. She was forgetting things she learned in college, the names of friends, and the lines for her various acting roles.
"I was living what looked like a normal life," she says. "I was still getting out and doing things and going to work, but I was just so confused all the time."
She's noticed a marked improvement since the RNS system was implanted. Coupled with the reduction in seizures and medication-related side effects, Hannah is finding more reasons each day to feel encouraged about her future. And she credits Dr. Gugger and Dr. Chen with helping her arrive here.
"From the beginning, Dr. Gugger was like, 'I'm going to get help for you,'" she says. "I worried a lot that, because I'm an actor and I have a lot of energy, people would think I was making this stuff up. So, I always appreciated that Dr. Gugger and Dr. Chen believed me and were determined to help."