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After 23 years of seizures, local woman finds relief

News Enterprise - 12/5/2017

One in 26 people in the United States are said to develop epilepsy at some point in their lifetime. When she was 12, Amanda Pedrick was that one.

A person is diagnosed with epilepsy if they have two unprovoked seizures that were not caused by some known or reversible medical condition, according to the Epilepsy Foundation.

Pedrick, 35, of Elizabethtown, said when others think of seizures, they tend to picture a person dropping to the ground, violently shaking their arms. Initially, she suffered from grand mal seizures, which fits the description.

"That is how mine did start out. They were pretty bad," she said, noting during one seizure, she bit off a piece of her tongue.

But, the seizures she now has aren't quite so bad, "knock on wood," Pedrick said. She hasn't had a grand mal seizure in about two years. Instead, she has complex partials and auras.

A complex partial seizure changes the person's level of consciousness. The person can appear awake but cannot respond to anything or anyone around him or her. The person usually stares into space.

The seizure can include involuntary movements called automatisms, such as lip-smacking, chewing, hand wringing, picking and swallowing.

"We have no clue what we're doing. I've been told sometimes that my eyes go to the side and sometimes, I speak gibberish. Sometimes I smack my lips. My hands, my husband says, I do duck hands and sometimes my hands become really tight and really strong," Pedrick said.

Curtis Pedrick, her husband, said she "looks like she is somewhere else."

An aura is a perceptual disturbance experienced by some with migraines or seizures before either the headache or seizure begins. It often manifests as the perception of a strange light, an unpleasant smell, or confusing thoughts or experiences, according to WebMD.

"For me, they are kind of like a scared sensation. You get this really scared and overwhelmed sensation that something bad is going to happen. It's kind of like a sense that a bigger one is getting ready to come right after," Pedrick said.

Medications, surgeries

Pedrick has been prescribed, and still takes, several medicines for her epilepsy to help reduce or stop seizures. She even has participated in studies, where she had to keep a journal, relaying to her doctor the symptoms she was experiencing from the drug she was testing.

"After all the medications weren't really working, my doctor started asking me if I wanted to be a guinea pig. 'Do you want to participate in these studies?'" Pedrick said. "I said, 'Yes, I'll do it.'"

Moving forward, a few years ago, Pedrick had her first surgery: vagus nerve stimulation.

"It's scary afterward. You come out of it and you can't really speak and you're just thinking, 'Oh, my gosh. I lost my voice,'" Pedrick said.

Vagus nerve stimulation is meant to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. A stimulator device is implanted under the skin in the chest.

As a result of the mild pulses, Pedrick said her voice goes out every two to three minutes.

"It sounds like I am going to cry, but I am not. It's because of this thing going off automatically," she said.

Last year, Pedrick had another surgery and had a NeuroPace, or responsive neurostimulation system, implanted.

Similar to a pacemaker that monitors and responds to heart rhythms, the responsive system monitors and responds to brain activity.

The responsive system consists of a small, implantable neurostimulator connected to tiny wires placed in up to two seizure onset areas. It comes with a simple remote monitor that can be used at home to wirelessly collect information from the neurostimulator and then transfer it to the Patient Data Management System, the NeuroPace website said.

The doctor can log into the management system at any time to review accurate, ongoing information about a person's seizure activity and treatment progress. It helps doctors learn more about an individual's seizures and improve his/her care.

"My brain surgery has been the most help," Pedrick said.

She says her number of seizures has declined by 50 percent, and she travels to Lexington every three months so her doctors can adjust the device. She remains on several medications, but hopes with time, they will decrease thanks to the NeuroPace.

Pedrick said during the tests for the responsive system, they discovered her seizures were coming from her Hippocampus, which is involved in the storage of long-term memory, including all past knowledge and experiences.

She said the Hippocampus looks like a seahorse, so after the discovery, her husband bought her a seahorse charm for her bracelet.

"I did think it was one of the sweetest things," she said. "It was a sweet surprise."

Support system

Pedrick said if it hadn't been for her husband, family and friends, the surgical experience would not have been as easy as it was.

"My family and my friends have been amazing. They have just been supportive, wonderful," she said, noting she had one friend stay with her in the hospital for a couple of days. "I don't know what I would have done if she wasn't there. She just made everything so much happier and better."

Pedrick said an aunt, who lives in Florida shaved her head in unison with her. She had to shave her head for the responsive system surgery.

Her husband said all he can do is support his wife.

"That is the worst part is all you can do is just be there," Curtis said. "She is one hell of a person to go through all that. I think that is what it takes is a good, strong person."

Amanda said her epilepsy hasn't been easy financially. After the surgery, she said they were struggling. Her husband took off from work right after the surgery to be with her. Curtis said his work, Geek Squad, also was supportive and even sent flowers.

Amanda, who works for Communicare, said her co-workers surprised her when she returned to the job after the surgery. They had raffled a quilt, raising around $400 to give her.

"I couldn't believe they did that for me," she said.

Aside from family and friends, Amanda also has had her spirits lifted from the "Ellen Degeneres Show." She said the show is her "happy hour."

"I am a huge Ellen fan," she said. "I've actually written to her because she decorates the stage pink for breast cancer awareness. I was like, 'Why don't we decorate it purple for Epilepsy awareness? That is just as important, you know.' ... She puts me in high spirits."

For awareness Amanda dyes her hair purple each year.

However, recently Amanda said they have not been able to watch the "Ellen Degeneres Show" because they had to cancel their cable because of financial strains.

"We're trying to figure out how to get her back," she said.

Amanda said some family members say, "I don't know how you do it. You're always such a happy person." She said she tries to be, but she's not.

"I definitely have my down days, just like anybody else," she said. "But you wind up dealing with it. You let a few cries out and you just go on to the next day."

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