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“I went through years of not being able to do anything,” says Janice Brien, a 61-year-old Menomonie, Wisconsin, resident. “I was put on permanent disability because of my uncontrollable epilepsy. I couldn’t even volunteer.”
Janice experienced seizures off and on her whole life. After being injured in a major motorcycle accident, she started experiencing grand mal seizures.
“When I hit about 43, they came on and they stayed,” Janice says. She could no longer work as a goldsmith, as it was too dangerous to work with welders, hot metals and fire. Her daughter, in her early teens, was in charge of calling 911 during Janice’s seizures.
Unhappy with medications
Janice, who was living in Milwaukee at the time, says she was taking far too many medications and did not like the side effects.
“I told my doctors I could not take them because of what they were doing to my brain,” Janice says. “They told me it was impossible (to get off of those medications).”
Janice says she also experienced post-traumatic stress disorder, fibromyalgia, osteoporosis and osteoarthritis. Doctors implanted a vagus nerve stimulator — a device that sends electrical impulses to the vagus nerve to reduce the frequency of seizures. Janice says the device reduced her larger seizures, but she still had frequent small ones. She worried about the long-term effects of the anti-seizure medications that she was taking. Janice was diagnosed with epilepsy-related dementia. Constant fear consumed her life, and she was afraid to leave her house.
Janice says she was so miserable that she considered ending her life.
“I couldn’t live like this anymore,” Janice says. “I knew there was something wrong.”
A new direction
For family reasons, Janice moved to the Menomonie area, where she connected with Scott Spritzer, D.O., a neurologist at Mayo Clinic Health System in Eau Claire, Wisconsin. She says that she was relieved when he understood that she wanted to get off the medications she was taking.
“He said, ‘I’m starting from scratch,’” Janice says. “He listened to me. He’s just the most wonderful, gentle doctor.”
Dr. Spritzer recognized that some of the events Janice was experiencing may not have been related to her epilepsy. He scheduled Janice for evaluation in Mayo Clinic Health System’s Epilepsy Monitoring Unit. There, her care team was able to observe her seizures and view her brain activity via an electroencephalogram, which is a test that detects electrical activity in your brain using small, metal discs (electrodes) attached to your scalp. Comparing the results of her unusual events over the course of three days, it was apparent that some of Janice’s episodes were not epileptic seizures. Those events, which appeared to be triggered by stress, would require a different treatment.
“Since Janice elected to stay off medications, I referred her to begin talk therapy for her nonepileptic events,” says Dr. Spritzer.
Janice says that she was amazed at how quickly her psychotherapist, Holly McAbee, was able to help her. Holly taught Janice to recognize her nonepileptic events by what she was feeling. She explained what was happening in Janice’s brain during these events and how she could control them with techniques, such as visualization and breathing.
“With Holly’s help, I can recognize the two and control the emotional — stress seizures I call them — that are brought on by my mind, my memories,” Janice says.
A dramatic turnaround
Dr. Spritzer credits Janice’s dedication to her therapy for her dramatic turnaround. Janice estimates that her quality of life has improved 75%.
“I enjoy life,” Janice says. “I am singing. I am smiling.”
Dr. Spritzer says it also was important for Janice to share all the details of her symptoms, which helped her care team to help her.
“I think the most important thing is to maintain a line of communication with your doctors,” Dr. Spritzer says.
With her seizures and nonepileptic events under control, Janice is able to volunteer again, working in a charity thrift store. She says that it feels good to be able to contribute.“Just because I have a disability doesn’t mean I can’t volunteer to help others less fortunate than me,” Janice says.