Back behind the wheel after epilepsy diagnosis

Jake Weiss felt like he was dying when his panic attack symptoms set in. He felt an abnormal sensation in his stomach. His heart would race. He started sweating. And he’d tune out the world for 30-second periods.

“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 Eau Claire man, who started experiencing the symptoms his freshman year of high school. “It’s like a feeling of either falling or drowning. You feel like you’re going to die.”

His panic attacks — or rather, what he thought were panic attacks — came and went. Often, he says his symptoms came on at night, disrupting his sleep and making mornings difficult. He says his performance suffered.

“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 or not even paying attention, 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 at Winona State University in fall 2016, but needed to drop out and move home when his symptoms intensified. He took a job as a cook at a local nursing home, and while at work one morning felt an elevated level of anxiety. He passed out and woke up in an ambulance. He was treated in the Emergency Department and released. That night, though, experienced symptoms like none before: His head turned. His torso twisted abnormally. His limbs stiffened. And he stopped breathing. He was having a major seizure, and his panic attacks were actually smaller seizures all along.

Doctors started Weiss on a seizure medicine, delved into his medical history and pursued a more detailed epilepsy evaluation. Part of that involved admitting him into the Epilepsy Monitoring Unit, a dedicated hospital unit at Mayo Clinic Health System in Eau Claire to evaluate, diagnose and treat seizures.

“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,” explains Scott Spritzer, D.O., a neurologist at Mayo Clinic Health System. “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.” An electroencephalogram, also known as an EEG, is a test that detects electrical activity in your brain using small, flat electrodes attached to the scalp.

"I didn't know if I had a future. I didn't know if I was going to live a normal life." —Jake Weiss

Weiss spent five days in the Epilepsy Monitoring Unit under continuous EEG monitoring as his medical staff tried to capture one of what he called panic attacks. On the third day, they were able to capture activity, which led to a confirmed diagnosis of epilepsy. With additional laboratory testing, doctors determined that Weiss’ seizures, called focal seizures, originate from the right temporal lobe of his brain and are 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 explains. “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, doctors turned to immune modulatory therapy to treat Weiss’ rare form of epilepsy, putting him on an intense, but effective, course of high-dose IV steroids and yielding successful results so far, says Dr. Spritzer.

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

A BRIGHTER FUTURE

According to Weiss, the treatments have not only led to better control of his seizures but also improved his overall quality of life. He says he’s been seizure-free for four months, can drive again and, for the first time in years, can focus and make plans for his future, such as returning to college next 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,” Weiss says, noting that things turned around for him after the 12-week steroid treatment. “But now, things are getting better, and it’s thanks to Mayo Clinic Health System.”

He says credits Dr. Spritzer for the pivotal role he played in his care, as well as the nurses and support staff who assisted him during his time in the EMU.

“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.”

Learn more about epilepsy and seizures:

• Not many people know how to react when observing somebody having a seizure. Read how to help someone having a seizure.
• Approximately 70 percent of people with epilepsy are able to find seizure control using a single medication or a combination of two or more. Read how a vagus nerve stimulator can help people with epilepsy.
• Epilepsy can appear and look different for everyone, with different behaviors, sensations and emotions. Read about a new option for seizure control.