Quelling a Brain Storm

The storm in Frank Taylor’s brain was subtle at first, without a clear cause.

About three years ago, there were unexplained headaches, bouts of forgetfulness, mood swings and depression.

A year later, the storm roared. He suffered a grand mal seizure at home. Taken to Lehigh Valley Hospital–Cedar Crest, he says family told him he didn’t know who he was for two weeks. He was talking to deceased people and there was a slight chance he might not break the neurological stranglehold that kept him in limbo.

He was eventually discharged from the hospital and went to rehabilitation. The subsequent diagnosis was autoimmune encephalitis, a rare condition in which the body creates antibodies that attack the brain, creating inflammation that can produce seizures and other negative side effects affecting memory, mood, sleep and more.

About 4,000 people are affected by it each year in the U.S. Frank Taylor was one of them – emphasis on past tense with the help of Zehra Husain, MD, and the Lehigh Valley Health Network (LVHN) Epilepsy Center. He received medication that stopped the autoimmune attack on his brain, and he was able to resume things such as driving and watching his young granddaughter.

Those who develop epilepsy as adults usually experience very sporadic seizures stemming from a single spot in their brain. Taylor didn’t fit that mold because he went from having no seizures to having a lot of them, originating on both sides of his brain.

“It came on really fast, really intense,” says Husain. Taylor’s seizures didn’t respond well to standard anti-seizure medication.

Seizures are not always visible and can be hard to spot. Husain said some are nearly imperceptible to the untrained eye. Outside of his grand mal seizure, many of Taylor’s subsequent seizures fell into that “hard to spot” category. “They can be extremely subtle, even unnoticeable to someone sitting next to you,” she says, adding electroencephalogram (EEG) monitoring pinpointed where Taylor’s seizures were originating in his brain.

Taylor, of Bethlehem, says things were stressful in the beginning before the cause of his seizures was pinpointed. “I just started rolling with it and stopped dwelling on it,” he recalls. “I thought I may have to live with this. I have to live my life and whatever happens, happens. That got me through it.”

Taylor, head custodian at Asbury United Methodist Church in Allentown, says he continued going to work during the search for the source of his problem, though at some points he was not climbing ladders or operating power equipment due to safety concerns. “They were phenomenal,” he said of support from his employer throughout his ordeal.

Husain says Frank’s circumstances immediately led her and other caregivers to suspect an autoimmune cause. That was confirmed when blood and spinal fluid samples tested at the Mayo Clinic lab confirmed autoimmune encephalitis and identified the responsible antibody. Hospitals around the country send samples to the Mayo lab to be tested for the inflammation associated with autoimmune encephalitis.

The antibody that caused Taylor’s problems tends to cause autoimmune encephalitis just once, Husain says. 

Treatment with a drug called rituximab was ultimately what was able to eliminate the rogue antibodies and tests later showed Taylor’s inflammation was gone. “What tends to fix most things is treating the underlying cause, which was the autoimmunity,” says Husain. “We saved his brain from quite a bit of permanent scarring. There’s marked improvement in his mood and memory. He’s a tough guy. He was working through all of this.”

Husain says she and others worked against the clock to stop Taylor’s seizures and limit any lasting effects or lifelong disabilities.

“That was absolutely the goal. It’s so gratifying to see someone come out on the other side, seeing how bad it was for him,” says Husain. “It’s really kind of amazing and humbling to see how someone could have all these symptoms and see how eventually over time they get better.”

Not all cases turn out as well as Taylor’s, admits Husain. “It was just really nice to see it all work out for him,” she says.

Taylor says those who know him saw him getting back to his old self.

“It’s totally 200 percent different than it was,” says Taylor. “I came pretty much full circle.”

One of the great things about getting better, says Taylor, is interacting with his granddaughter. “The first year after she was born, I had no interaction with her. I didn’t trust myself around her and I almost didn’t know her.”

Things are different now. “She’s a smart kid. I’m glad I’m around to see her grow,” he says.

Taylor is on just one anti-seizure medication and likely will be for the rest of his life. His memory still isn’t where it was, but it’s much better than when the inflammation was present.

He praised Husain and everyone at LVH–Cedar Crest who had a hand in his care and treatment. “They are some of the most phenomenal people I’ve ever met,” he says, his voice choked with emotion. “They took care of me like I was a part of their family.”

Husain said one of her EEG technicians recently asked about Taylor, wondering why she hadn’t seen him lately. At one point, he was such a frequent visitor to the epilepsy center, he was on a first-name basis with most there.

“I said, ‘Didn’t you hear? He’s all better!’” Husain says.