Fighting the Odds: How One Birmingham Mom is Working to Live With Epilepsy
After a risky surgery in 2009, life has become somewhat normal for this mother, wife and PR executive. "I have my moments ... but I try not to feel sorry for myself."
Alysse Mengason (right) has learned to cope with her epilepsy along with her husband Andrew and daughter Hayden. Courtesy of Alysse Mengason
Every day is a battle for Alysse Mengason, a Birmingham mom, wife and PR executive.
That’s because every day, Mengason wakes up wondering: “Will I have a seizure today?”
Mengason is one of 3 million Americans who suffer from epilepsy, the incurable neurological disorder that dogs its patients with unpredictable seizures.
However, after an experimental surgery more than three years ago, this 42-year-old is now the mother to an energetic 6-year-old, has re-entered the workforce and is learning to reclaim her life.
Unexpected seizures throw 30-year-old into coma
When Mengason had her first seizure, in January 2003, everything was going right with her life, she said. She was 33, living in Maryland, working in PR at a major health care company and was planning a May wedding to her new fiancé, Andrew.
Then, she began feeling sick. “I was planning a gigantic meeting (at the time), so I thought I had the flu,” she said. “I was working pretty hard.”
Then, one night while she was sleeping, she had a grand mal seizure. According to the the Epilepsy Foundation of Michigan, a grand mal seizure involves a period of rigidity, muscle jerks, shallow breathing and the loss of control over certain bodily functions.
At the time, however, Mengason said her fiancé didn’t know what to think. “He thought I was having a heart attack,” she said.
After having four more seizures that evening, Mengason slipped into a coma. When doctors couldn’t figure out what was happening to her, Mengason’s mother immediately flew her to William Beaumont Hospital in Royal Oak. Mengason grew up in Birmingham, she said, and her mother still lived in Beverly Hills.
Beaumont doctors said her seizures had been brought on by a bout with meningitis — a diagnosis that would later turn into epilepsy. However, upon waking up from her coma, Mengason had suffered severe short-term memory loss going back three years.
Suddenly, Mengason said, she didn’t know who her fiance Andrew was. She didn’t know what September 11 was. She didn’t know what she did for a living or that her father was dead.
Mengason never regained those memories, a fact she had to accept during the next nine months of rehabilitation and therapy.
“I had to realize I wouldn’t remember my father dying,” she said.
Surgeries prove unsuccessful
But life moved on for Mengason. After initially canceling her wedding, she and Andrew later tied the knot in Puerto Rico. She slowly relearned her job, often times conducting therapy sessions at the office. In 2006, she and Andrew worked with doctors so they could have their first child, Hayden.
Still, Mengason continued to have seizures, as many as 20 a week. During the next few years, Mengason said she tried dozens of options, including the high-fat, ketogenic diet (typically used to treat children with epilepsy).
In 2006, Mengason also underwent a series of surgeries to determine if she was a candidate for brain surgery. During the process, doctors would use stress, sugar and lack of sleep to trigger Mengason’s seizures while they monitored her brain activity.
It was then that doctors discovered the seizures were originating from both sides of her brain — making her ineligible for a risky surgery that would have removed parts of her brain.
“I was deemed high functioning,” Mengason said. “They didn’t want me to lose my cognitive skills or my balance.”
New treatment 'changes my life'
In June 2007, Mengason and her family moved back to Birmingham. While her husband went to work at a textile restoration company in Berkley, Mengason began seeing more doctors.
According to Mengason, she knew she had to do whatever she could to reclaim her life from the seizures.
“I knew that my memory was getting worse,” she said. “I wanted to continue working. I had a family now. I wanted to see what we could do.”
That’s when she started seeing Dr. Aashit Shah, a Wayne State University professor and neurologist at the Detroit Medical Center's Harper Hospital who specializes in epilepsy.
Mengason said Shah convinced her to try surgery again, but this time vagus nervestimulation (VNS) therapy.
Often referred to as a pacemaker for the brain, VNS therapy involves inserting a small pulse generator in one’s chest. This generator — about the size of a silver dollar — sends mild, intermittent doses of electrical stimulation to the left vagus nerve in the neck every 55 seconds.
According to Shah, VNS therapy can be effective for epilepsy patients when medication doesn't seem to work.
"When you try one, two, three medications and they don’t help patients, or patients who can’t be helped with surgery, this is an option," he said.
“It feels like a tug on your vocal cords,” Mengason added. “It’s a noticeable tinge as it sends charges to your brain.”
Since she started using the VNS therapy in 2009, these pulses have kept her seizures in check, Mengason said. She has fewer seizures a week, her seizures are less intense and her recovery time has improved dramatically.
“My doctor told me, ‘you have nothing to lose, and plenty to gain,'” said Mengason. “For me, the answer was simple — let’s give this a try … (Now), this device has changed my life.”
Living with no regrets, sharing her story
Now, years after the VNS device was implanted in her chest, life moves at an everyday pace for Mengason and her family.
Occasionally, it is interrupted by seizures, but Mengason said she only has two to three grand mal seizures a year now. She also believes her seizures have grown shorter.
Mengason is also working full time in the PR department of a downtown hospital. Two days a week, she works from home while a friend drives her down the other three days. Because of her condition, Mengason can’t drive.
According to Mengason, she is also unable to lay flat on her back, can’t do yoga, has to sit up at the dentist’s office and had to abandon a former hobby — skiing — for fear of falling and jarring the VNS device.
She’s also had to make accommodations with her daughter, Hayden. Mengason said she’s made friends who drive her daughter to school at Cranbrook’s Brookside School everyday. And even though she’s only 6, Hayden knows what to do in case mom has a seizure.
“She knows to call 911 and then her dad,” Mengason said. “And my mom is just over in Beverly Hills.”
What Mengason doesn’t do is live with regrets.
"I have my moments,” she admitted. “But I didn’t cause this, so I try not to feel sorry for myself.”
She’s also working to improve the lives of Michigan’s epilepsy patients through her work volunteering with the Epilepsy Foundation of Michigan.
“Seizures are kind of an ugly thing,” she said. “People are afraid of them … Having the kind of epilepsy that isn’t addressed well with medications is very scary and at times can feel hopeless. If I can share my story to give someone living with epilepsy hope and let them know VNS therapy is an available option, that’s huge.”
Mengason blogs at BrainThunders.com. For more information on living with epilepsy and a breakdown of the various kinds of seizures, visit the Epilepsy Foundation of Michigan. For more information on VNS therapy, talk to your doctor or visit Cyberonics.com.
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