• Neurology Patient Stories

    Looking Toward the Future After a Long Road to Epilepsy Diagnosis

Jake Weiss in his care after epilepsy treatment let him return to driving. Undiagnosed epilepsy disrupted Jake Weiss' life for years. But a comprehensive evaluation finally revealed the true nature of his medical condition and gave him a new way forward.

Jake Weiss says he felt like he was dying when panic attack symptoms set in. His heart raced. He got an abnormal sensation in his stomach. He started sweating. And for a brief time, he'd tune out the world around him.

"I'd freeze up and forget what was going on. I'd be in class or at a golf meet or something, and I'd just blank out," recalls the 20-year-old from Eau Claire, Wisconsin, who started experiencing the symptoms during his freshman year of high school. "It's like a feeling of either falling or drowning. You feel like you're going to die."

These episodes came and went, and the symptoms often occurred at night. They disrupted Jake's sleep, made mornings difficult and took a toll on his day-to-day life.

"When you're at school trying to learn stuff or you're at a golf meet trying to compete at a varsity level and not focusing for 30 seconds, it was hard," he says. "I struggled in school my last few years because I just couldn't pay attention."

Life interrupted

Jake started college in 2016. But he had to drop out and move home when his symptoms intensified. He took a job as a cook at a local nursing home. While at work one morning, Jake felt an elevated level of anxiety. Then he passed out. When Jake woke up, he was in an ambulance on the way to a hospital, where was treated and released.

That night, Jake experienced symptoms like none he'd had before. His head turned. His torso twisted abnormally. His limbs stiffened and he stopped breathing. He was having a major seizure. He subsequently learned that what he assumed to be panic attacks over the years were actually small seizures.

Jake started taking an anti-seizure medicine. His care team reviewed his medical history and recommended a detailed epilepsy evaluation. Part of that involved admitting Jake into the Epilepsy Monitoring Unit at Mayo Clinic Health System in Eau Claire, Wisconsin.

"The Epilepsy Monitoring Unit is a dedicated unit in the hospital where a patient with spells suspected to be seizures can be admitted for long-term EEG monitoring in hopes of clarifying if they truly are suffering from a seizure disorder," says neurologist Scott Spritzer, D.O. "We can do things like wean anti-seizure medicines while having nursing staff available and someone monitoring the EEG to make sure it's being done in a safe way. That allows us to perform these evaluations and get more expedited answers for patients."

"Not that long ago, I didn't know if I had a future. I didn't know if I was going to live a normal life. But now things are getting better."

Jake Weiss

An electroencephalogram, also known as an EEG, is a test that detects electrical activity in the brain using small, flat electrodes attached to the scalp. Jake spent five days in the Epilepsy Monitoring Unit under continuous EEG monitoring as medical staff hoped to capture one of his episodes.

On the third day, they were able to record a seizure. That led to a confirmed diagnosis of epilepsy. With additional laboratory testing, they determined that Jake's seizures, called focal seizures, originated from the right temporal lobe of his brain. They were triggered by an autoimmune process — a rare condition according to Dr. Spritzer.

"Essentially, like any other autoimmune disease, the body for some reason or another begins attacking its own systems," Dr. Spritzer says. "In this circumstance, the body is forming antibodies that ultimately cause irritation or inflammation on the brain, causing seizures."

In addition to anti-seizure medicines, immune modulatory therapy was used to treat Jake's rare form of epilepsy. The therapy involved putting him on an intense course of high-dose IV steroids. So far, the results have been positive.

"Ultimately in these circumstances, time is always what will tell us if our treatments are effective or not," Dr. Spritzer says. "But I'm cautiously optimistic that we've made some significant improvements in terms of his epilepsy."

A brighter outlook

Jake says the treatments have not only led to better control of his seizures, they've improved his overall quality of life. He's been seizure-free for months, can drive again, and for the first time in years, he can focus and make plans for his future. That includes returning to college in the fall.

"Not that long ago, I didn't know if I had a future. I didn't know if I was going to live a normal life," Jake says. "But now things are getting better, and it's thanks to Mayo Clinic Health System."

Jake credits Dr. Spritzer for playing a pivotal role in his care. He's also grateful for the nurses and support staff who assisted him during his time in the Epilepsy Monitoring Unit.

"Everybody was nice and everything was very well run," Jake says. "The hospital did a great job of making me feel comfortable when I was there. It was just an awesome experience overall."

Note: A version of this story originally appeared on the Hometown Health blog.