Unexplained seizure episodes were taking a toll on Heidi’s busy life.
Following expert diagnosis and treatment by University of Minnesota Health MINCEP Epileptologist Ilo Leppik, MD, this mother, wife, businesswoman and athlete is now living life seizure free.
Heidi would repeatedly experience tingling, prickly sensations and weakness down the left side of her body. The unusual experience was often Heidi’s only warning than an “episode” was about to occur.
Often, these episodes were accompanied by a momentary loss of focus—leaving her with a glassy appearance that her husband referred to as “slightly blanked out.” Heidi experienced these small episodes on and off for at least a year prior to having any visible seizure-like activity. Heidi had no way to predict when these small episodes would occur, and could not stop them once they began. Heidi felt shaken and unsettled.
Diagnosed with type I diabetes in college, Heidi was in-tune with her body and in control of her diabetes. She worked hard to not let the condition control her busy life, having traded daily insulin shots for an insulin pump. Despite her skilled diabetes management, her physician thought Heidi’s strange episodes must somehow be related to her diabetes. Heidi analyzed her diet and activities in an attempt to reveal a clear cause and effect for the symptoms. After studying it, she suspected that her episodes correlated with her high consumption of diet sodas.
For several years, Heidi and her husband sought answers. Frustration built as medical professionals told Heidi the episodes were “in her head” and that “she needed to live a more peaceful life.” Heidi left one appointment heartbroken when a care provider suggested she read a book on ways to help reduce her stress and symptoms.
“I could mask it, nobody saw, and I started to withdraw a little bit. This was a three year journey of trying to catch that falling star—of what it was,” Heidi said. “It was like a cat-and-mouse game.”
But the frequency and severity of the episodes progressed. Following a stressful day of packing for a family vacation and little sleep, she awoke in the middle of the night to her husband shaking and calling her name. The next day she felt like she had been hit by a bus and her confidence shaken. Later she would learn she had experienced her first generalized tonic-clonic seizure.
It was the first visible sign that this was something more than just “stress-related” tension.
“As heartbreaking as this was, I felt an odd sort of relief that someone might “believe” me now and look further into the root cause of the symptoms I had been feeling,” Heidi said.
She attended a MINCEP educational seminar hosted led by Leppik. Leaving the seminar, she hoped he could be the one to uncover the answers.
“Dr. Leppik worked tirelessly with the investigative process—he was going to figure it out,” Heidi said.
Leppik did “figure it out,” and diagnosed Heidi with epilepsy. Epileptic seizures occur when a brief, strong surge of electricity affects all or part of the brain. Stress and lack of sleep were triggers, but not the cause. The next step was determining the type of seizures and best way to control them.
Heidi’s delayed diagnosis is not uncommon. MINCEP outcome studies indicate that the average patient suffers unnecessarily for 16 years before coming to MINCEP for help.
“Epilepsy is a complex chronic condition requiring a comprehensive treatment approach,” Dr. Leppik said. Treatment is not one size fits all. For that reason, Dr. Leppik develops a close personal relationship with patients, educates them about the disease and simply lets them know that he cares.
“One of the many differences why MINCEP is successful and others are not in treating patients with epilepsy is that we provide patients a focused approach to treatment, in which we see new patients over several visits—not in one visit,” Leppik said. What works for one patient may or may not work for another. MINCEP, designated as a Level 4 epilepsy center, gives patients access to more complex forms of intensive neuro-diagnostic monitoring, like video EEG, and more extensive medical, neuropsychological and psychosocial treatment.
Heidi worked with the MINCEP team and Leppik for two years to find the best ways to manage her epilepsy. This included a series of different drug mixtures and diagnostic tests, including stress-induced EEG and sleep-deprived EEGs to induce seizures. But she was still not seizure free.
Leppik recommended Heidi enter into the hospital as an inpatient over several days, induce the seizures to help determine if there was a different course of action. “The only way to the results was for me to have more seizures in the right place, at the right time,” Heidi said.
The course of action suggested by Leppik took Heidi by surprise. Diagnostic tests revealed that Heidi was a perfect candidate for a front temporal lobectomy—the surgical removal of the front part of the temporal lobe.
“She was lucky because she has one of the types of epilepsy that can be treated with surgery,” Leppik said. “Not everyone is a good candidate for surgery, but we determined where the seizures were originating and by removing that portion of the brain we were able to eliminate the seizures.”
Today, she has been seizure-free for over eight years.
“Even if we go back to square one, I have lived the best 10 years of my life,” Heidi said. “I am so thankful for the people in my life, my husband, children, family and the expertise of Dr. Leppik.”
Heidi continues to push herself to be in the best health. She completed a half-ironman triathlon last year and runs countless marathons. To celebrate her 25th wedding anniversary this past year, Heidi and her husband biked from San Francisco to Santa Barbara.