Just six weeks after she had her second daughter, Jenny Hunt had her first tonic-clonic seizure at home, losing consciousness. She woke up on the bathroom floor to find EMTs trying to put her on a gurney. Fortunately, her husband, Christian, is a sports medicine athletic trainer for UNC Athletics and knew to call 911.
That April 2019 seizure put other experiences she’d had into context.
“All my life, I’d had these weird feelings of déjà vu, or I’d get funny feelings in my stomach,” Hunt says. “I thought it might be anxiety, but I was afraid to tell anyone.”
In hindsight, those feelings were actually seizures.
“That’s not an uncommon story—people can have strange episodes that last less than a minute, some of them feeling like panic attacks,” says UNC Health neurologist Atif Sheikh, MD. “Once they have their first convulsive seizure, they’ll look back and recognize that these strange episodes were actually seizures and there might have even been loss of awareness or responsiveness during those events. It can be very difficult to recognize, but it’s epileptic activity.”
Hunt, now 37, tried several medications for epilepsy, but nothing controlled all of her seizures, and she found the mental health side effects unbearable.
“I tried to be positive, but it was hard,” Hunt says. “Every medication I took for the seizures had the side effect of depression, so life was miserable. I had a 2-year-old and a baby, and I couldn’t drive because of the seizures. I was trapped. I felt I had to get a better answer.”
Pursuing Surgery for Seizures
About 30 percent of people diagnosed with epilepsy develop refractory, or drug-resistant, epilepsy, which means that seizures aren’t controlled after trying two or more medications, Dr. Sheikh says. At that point, he recommends considering surgical options.
“The work-up for surgery is a long journey and takes time, because we have to find the area of the brain that’s causing epileptic activity,” Dr. Sheikh says, noting that it can take months.
Hunt started the process to determine if she was a candidate for surgery in September 2020. She had multiple brain scans, memory tests and stayed overnight for more than a week in UNC’s Epilepsy Monitoring Unit for continuous electroencephalogram (EEG) recording and video monitoring. A typical stay lasts until three to five seizures can be recorded, and the EEG recording shows where abnormal brain activity is occurring during a seizure.
“I got really close with all the nurses,” Hunt says. “The whole EMU staff is a dream team.”
Based on the first phase of testing, Hunt was deemed a good candidate for surgery, but doctors wouldn’t know the exact approach until she completed the next phase of testing, which involved invasive surgery. In January 2021, doctors placed electrodes in her brain for stereoelectroencephalography (SEEG). With this test, doctors would be able to home in precisely on where in the brain the seizures were happening; the electrodes are later removed.
“You’re like a cyborg, because the nodes are in your brain, and they hook you up to a computer, essentially,” Hunt says. “It was difficult, because I had to have my hair cut off, and that felt like part of my identity.”
The test confirmed that Hunt had her typical seizures coming from the right temporal lobe, as well as activity in the occipital lobe, an area that is not typically operated on because it could affect vision. An MRI revealed a small portion of the hippocampus in the right temporal lobe, which stores memories, had never fully developed and was causing seizures. Hunt says she had never had a good memory.
Hunt learned just how little that part of the brain was contributing when she had what’s known as a Wada test as part of her evaluation. During this test, doctors are able to put half a person’s brain to sleep at a time to determine how surgery could impact memory and language function.
“I told my doctor I wanted to be able to still speak French, which I’ve done since I was 13 years old, and I have to be able to sing,” says Hunt, who sings opera locally. She was awake during the procedure and talked to her care team, though she didn’t feel pain because of anesthesia. “When they turned off the right side of my brain, I could do both those things, but when they turned off the left side, I couldn’t speak at all. It showed we could do surgery on the right side of my brain because it was not helping me.”
At UNC Health, the entire epilepsy care team—neurologists, neurosurgeons, radiologists, nurses and psychologists—meets weekly to discuss the best surgical treatment for patients. Hunt says that knowing so many experts gave input on her case made her eager to move forward with surgery. At the time, her epileptologist at UNC Health was Angela Wabulya, MD. “I trusted Dr. Wabulya with my life. She always listened to me and never left my side,” Hunt says.
In March 2021, she chose to have surgery on her right temporal lobe to remove that small abnormal piece of hippocampus.
The “Old Jenny” Drives Again
Hunt says recovery from surgery was difficult, with frequent headaches, but she’d do it all again.
“Everyone took great care of me, and I felt very lucky that I was a good candidate for surgery, because some people have seizures in an area of the brain where you can’t operate,” she says. “I didn’t want to miss that chance. The hair grew back, and unless I tell people, they’d never know I had brain surgery.”
Hunt had to continue to take her medications, though, and she still experienced the side effect of depression.
“The goal of surgery is to stop the seizures so they’re less disabling and you have more confidence to do the things you want to do,” Dr. Sheikh says. “Resection, or removing the area of the brain causing seizures, is potentially a curative option, but we do have to be very clear with people that they’re not always coming off their medications.”
Because some of Hunt’s seizure activity is in her occipital lobe, there’s a medication she will continue to take for the rest of her life. But in 2023, she was weaned off two of her three medications, which resolved her depression symptoms.
“The old Jenny came back to life,” Hunt says of stopping the medications. “I could find joy in things again.”
Though Hunt and her family had moved to Apex during the pandemic to be able to walk to several parks and her daughters’ elementary school, one of her greatest joys post-surgery was regaining the ability to drive; in North Carolina, a person must be seizure-free for six months to get behind the wheel of a car.
“Driving is one of my favorite things, so that was a big struggle,” Hunt says. “I love cars, I love car television shows. Some of the most fun I’ve ever had was getting to take a trip around a racetrack in the passenger seat. I put the date I could drive again in my calendar as ‘Jenny’s Independence Day.’”
Hunt, who works as a scientific editor, has now been seizure-free for almost five years. She will always struggle with her memory but knowing the reason why has been helpful.
“I have half of the average person’s memory,” she says. “If I have to ask for your kid’s name several times, that is when I play the brain surgery card.”
Advice for Others Feeling “Off”
Hunt encourages anyone who has strange feelings or episodes to talk to their doctor.
“Don’t be afraid to speak up or ask questions,” she says. “I talk to people all the time who say they feel like something is off, but they dismiss it. Seeing a neurologist and getting imaging is crucial to see if something is going on with your brain. Answers are always better.”
She says it’s vital to find a team you can trust.
“The epilepsy team at UNC is one of the best in the nation, but no matter where you are, make sure you have a doctor that feels like they’re on your side,” Hunt says. “You might have to go to several doctors to find them, but it’s worth it. With my team, I knew I was in really good hands.”
If you’re concerned that you might be experiencing seizures, talk to your doctor. If you need a doctor, find one near you.