Something odd was happening to Arielle Hoffman.
It was December 2016, and the aspiring actress was mid-shift at a Manhattan brunch spot when she was struck by a strange sensation. Moments later, she realized she’d wet herself — and a slice of time had disappeared.
“It was almost as if somebody skipped ahead 30 seconds in a movie, and you’re like, ‘Wait, what just happened?’” Hoffman, 22 at the time, told The Post.
At first, she brushed it off. Several of her friends were struggling with anxiety, often swapping stories about panic attacks and stress spirals. So when the episodes kept happening, Hoffman assumed she was experiencing the same thing.
But they weren’t panic attacks. Instead, an electrical firestorm was raging inside her brain.
A body out of control
The episodes struck without warning, lasting 30 seconds to three minutes and scrambling Hoffman’s speech, memory and movements.
“I would be talking to a table at work or on the phone, and what I was saying was gibberish, but I thought I was saying English words,” she said.
Sometimes she’d drop to the floor until the episode passed, repeating, “I just can’t, I just can’t,” over and over. Other times, she’d go non-responsive — then pick up the conversation as if nothing had happened.
She also struggled with incontinence, one of the most difficult, almost “shameful” side effects.
“I was wetting myself during 90% of the seizures that I had, if not more,” Hoffman recalled.
Through it all, she kept working full-time and living like many twenty-somethings in NYC, waking up at 4:30 a.m. for early shifts and spending long nights out with friends.
“I think I was trying to prove to myself that I could handle it, that my life wasn’t that different, and that I’d be fine,” Hoffman said, noting she also needed to keep her job for health insurance to pay for her care.
From panic to seizure
Two months after the first episode, Hoffman experienced a tonic-clonic seizure — formerly known as a grand mal — while sleeping. Her now-husband, Alex, caught her as her unconscious body jerked, preventing her from falling out of bed.
She was taken to the ER and was later sent home with a prescription for Keppra, an anti-epileptic drug. But the spells continued.
In April, another tonic-clonic seizure struck while Hoffman was at work. She was rushed to Mount Sinai West, where doctors suspected she had a seizure disorder.
Hoffman was told that from then on, she couldn’t be alone. Her mother flew in from Florida, and Alex, her sister and friends rotated shifts by her side.
A week later, Hoffman returned to Mount Sinai to review her medical history with an epileptologist, Alex and her mother.
“They told her they’d been writing down these episodes [I was having], and I’m saying, ‘Yeah, they’re panic attacks,’” she recalled. “And then while we’re in the room, I had one.”
As Hoffman came to, the doctor told her she had just suffered a seizure — finally putting a name to the strange incidents that had been plaguing her for months.
“The most reliable difference between a seizure and a panic attack is time course,” said Dr. Lara Marcuse, Hoffman’s epilepsy neurologist and co-director of the Mount Sinai Epilepsy Center.
“Seizures that cause panic last from seconds to minutes, they tend to be very short and powerful. Panic attacks last longer,” she explained. “Another clue is associated symptoms like confusion, deja-vu or abdominal sensations.”
A “pacemaker” for the brain
Hoffman stayed in the hospital for a week, where doctors diagnosed her with epilepsy.
She’d been having focal impaired awareness seizures, which begin in one hemisphere of the brain and, like in Hoffman’s case, can spread over time. They account for about a third of seizures in adults with the chronic neurological disorder.
“It was like my body was turning against me, and there wasn’t anything I could do.”
Arielle Hoffman
In the months that followed, doctors tried several medications to control the episodes. None of them worked — and they came with a steep price.
“It’s so expensive to be sick. I felt like that was a punishment,” Hoffman said. “Like, God forbid I survive another day, I now have to spend $800 a month on medicine.”
Fearful she might have a seizure on set, Hoffman was also forced to step away from acting.
“It was like my body was turning against me, and there wasn’t anything I could do,” she said.
Eventually, doctors told Hoffman that her best chance of stopping the seizures would be surgery.
“With many decades of life to live, Arielle, if not treated, would have been in significant danger from this unpredictable disorder,” said Dr. Fedor “Ted” Panov, Hoffman’s neurosurgeon and director of Mount Sinai’s Adult Epilepsy Surgery Program.
“[There are] significant psychological issues like anxiety and depression increasing,” he said, plus the “small but real risk of seriously hurting yourself or others … and the chances of death go up 10-fold compared to seizure-free patients.”
To stop the episodes, surgeons planned to implant a neurostimulation device — similar to a pacemaker — in Hoffman’s skull. Thin wires would be placed in the seizure-prone areas of her brain, detecting abnormal activity and delivering brief pulses of electricity to interrupt it.
But first, doctors needed to pinpoint exactly where the seizures were originating. Hoffman was weaned off her medication, and her daily seizures spiked from eight to 21.
“I remember there being so many that I begged for my medication back,” she said.
The next step was stereoelectroencephalography (SEEG), in which surgeons drilled 14 small holes in her skull and placed sensors directly on her brain to see where the seizures were happening.
Finally, Hoffman underwent surgery to place the NeuroPace implant in September 2018, nearly two years after her first seizure.
Surgeons said the device could slash Hoffman’s seizures by 70% over seven years, and she started a new medication to reduce them even further.
A life reclaimed
Just 10 days after the operation, Hoffman returned to work, a line of stitches still fresh on her crown. For the next nine months, an engineer tracked her brainwaves and adjusted the device as needed.
“In July 2019, I stopped having seizures completely,” she said.
At first, Hoffman feared the seizures would return. But as months — then years — passed without another incident, doctors confirmed they appeared to be gone for good.
“My case is weird, because I randomly started having seizures out of nowhere, we don’t know why,” Hoffman said. “And then, just as fast as they arrived, two and a half years later, they were gone.”
Today, Hoffman, 31, takes daily medication to reduce any chance of recurrence and sees her doctor annually.
She recently underwent her first procedure to replace the battery pack in her brain, something she’ll need every seven to ten years.
“I have the privilege of forgetting every day that I have epilepsy — and that’s not normal” Hoffman said. “But I’m so eternally grateful.”
