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Solving seizure mysteries


Last May, life as Erin Burns knew it changed.

A 26-year-old mom of two, Burns was hit head-on in a car accident. The airbag broke her carotid artery on impact, causing a stroke, and she spent the next month in the hospital in a coma. She woke up in a hospital room not knowing where she was or what had happened.

“When I first woke up, I saw my mom and I haven’t seen her in years, so I panicked. I knew something was wrong seeing her there, but I didn’t realize it was me. It was like a dream waking up,” said Burns.

It was her dad that broke the news that she had been in a coma.

“He told me that he didn’t know if I was going to come out of it. They had called my entire family and said it was time to say goodbye,” said Burns.

Burns said hearing those words was one thing, but then the realization sunk in as she was looking in the mirror for the first time. Instead of the long head of hair she remembered, she was now bald with a scar. Away from her children, son Carson, age 7, and her daughter Colby, age 5, she spent the next several months in the hospital.

“It was hours and hours of physical and occupational therapy, every day. I also had speech therapy because I was incubated while on life support and lost my voice. I used a whiteboard to communicate for the first month after I woke up. They said I would never be able to walk again, but now here I am. I’m a work in progress,” said Burns.

She said the hospital staff made the work and the experience bearable.

“One of my physical therapists, Michelle, would sit in the hallway with me and just let me cry. It was a lot of work, and I missed my children,” said Burns.

She got out of the hospital and immediately started trying to recapture life again, with her children, at her house, even going back to work as a server and bartender at Bubbas 33. The staff at Bubbas 33 had been completely supportive while she was in the hospital, and she wanted to get back as soon as she could.

“They held fundraisers for me and helped keep my rent paid while I was in the hospital. For months they made sure my children had a house to go to and even had a wheelchair ramp installed for me before I got home,” said Burns, “They made sure I didn’t lose anything because of the accident.”

But then Burns started having seizures.

“It started with one after I left the hospital, then they went from once a month to twice a week before happening every day. I had one at work one day. In February, I fell on a metal bar and knocked myself unconscious. Another employee heard me, and I woke up in the hospital after the manager called an ambulance,” said Burns.

Her neurologist, Dr. Hardik Doshi, specializes in epilepsy and surgical epilepsy. When he arrived in Fayetteville to work in the Cape Fear Valley neurology department in June 2022, he started laying the groundwork to create a new inpatient unit at the Cape Fear Valley Medical Center. The Epilepsy Monitoring Unit (EMU) started with its first patient in November 2022.

“It’s a big deal to have this in our health system,” Doshi said. “In EMU, patients are monitored on continuous EEG and video 24/7 for about a week. The nursing staff is trained to recognize seizures and act in a timely manner.”

If a patient fails to control their seizures with two anti-seizure medications, the changes of becoming seizure-free with a third anti-seizure medication is only about 4 percent. At that point, a diagnosis of epilepsy needs to be confirmed first. Once confirmed, non-medication options including epilepsy surgery, which offers better chances of seizure-freedom and seizure reduction than trying more medications. The first step in that direction is EMU admission.

Doshi said that this is incredibly important because the unit not only gives an idea about potential seizure focus, but it also helps to help correctly diagnose the patient, to classify epilepsy and to see if medication needs to be changed depending on epilepsy type. During the study, epileptic patients are monitored, and doctors try to induce seizures to try to determine where the seizure activity is coming from.

“For four or five days, we stop the patient’s meds and use tactics like sleep deprivation to capture the seizure activity,” said Doshi.

Once they have collected the data needed, the patient undergoes further testing through MRIs, PET scans, neuropsychological test, etc. Each patient’s case is then presented in a multidisciplinary epilepsy surgical conference at an academic center where other doctors can confer and determine a course of action.

“Some patients have tried meds after meds, and nothing works. Once you have the answers from this study, it is easier to be treated,” said Doshi.

So far, Doshi has tried two different medicines on Burns trying to stop her seizures, but both have failed. As a prime candidate for the study, Burns started the process in March, although she was only in the unit for two days before enough information was obtained to determine her next steps.

“On the first day, she was sitting, talking, able to use her phone, but then her left arm would involuntarily jerk,” Doshi said. “She thought they were muscle spasms, but they were actually mini-seizures. On the second day, she had a grand mal seizure.

Doshi said that is example of why the study is important to patients, especially those who may live alone.

“It gives us good information and data. In her case and in others, some patients do not even realize that they are having seizures, especially while they sleep,” said Doshi.

Burns said her experience with Dr. Doshi and Cape Fear Valley has been nothing short of phenomenal.

“Dr. Doshi is pretty amazing,” she said. “He answers my questions right away and he’s so professional. And his staff, you can tell they are there because they want to be there, to help people. They are just incredibly thoughtful and kind, not just to me, but also to my dad,” said Burns.

Currently, Burns still cannot feel half of her face, is trying to recover from paralysis, and does not have use of her left arm, but she is hopeful that a new medicine Doshi put her on will work. She gives is a 25 to 30 percent chance of stopping her seizures. Her biggest hope is to rebuild her life, which she works towards daily.

“I hope my life gets back to normal soon,” she said. “It wasn’t long ago that I was making breakfast, lunch and dinner for my kids, and getting them to school. I miss that. It’s the little things that are the big things. Even things like folding laundry. With one hand, it takes an hour longer to fold than if I had two hands to use.”

Finding another type of job is also something she said she might need to do, despite being a server and bartender for her entire adult life up until the accident. She said her children and her faith keep her going.

“I use singing at my church to help get my voice back. I keep telling myself that this won’t be forever,” Burns said. “I pray daily. I can’t just sit and be sad. I have to learn; I have to figure out how to be creative and I need to figure out how to do things differently. At the end of the day, when my kids tell me that they are proud of me, it means everything. It wasn’t that long ago that I was teaching them to walk and now they are helping me relearn. When they are older, I can’t wait to tell them that they saved my life.”

Doshi hopes to increase the number of beds in the unit to accommodate every patient who needs to be tested. He said that anyone who thinks they might be a candidate for the Epilepsy Monitoring Unit should request it from their neurologist and get scheduled as soon as possible by calling (910) 615-3350.

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