Amanda Moyer doesn’t know when the moment will come.
It happens three or four times a month. It could be when she’s working, watching television or taking a shower. Everything will be normal and then suddenly she’s gone.”When the seizures happen, my body shuts down,” said Moyer, 38, of Topton. “You space out. You’re unconscious.”Moyer is one of nearly 3 million people in the United States living with epilepsy. She’s been living with the disorder for 23 years.
She’s tried the drugs. She’s tried one surgery and is pondering another. Some treatments have worked better than others, but epilepsy is a big part of her life.”It’s one of the things you try to live your day,” she said. “We have to take all this medication to try and control seizures, and it doesn’t always happen that way. I’ve been through 12 medications and I’m still having seizures.”November is National Epilepsy Awareness Month.
For people like Moyer, it’s a chance to talk about a condition that draws less attention than other conditions, but is still very hard to live with. Moyer said she wished people knew more about the disorder that has affected her ability to drive, to work full time and to do the other things she wants to do.”One thing I can say about epilepsy is that it’s a life changer,” she said. “We really just want more awareness and want people to understand it more. I don’t know how many times I’ve heard that epilepsy is no big deal.”
Having a seizure
There are different types of seizures, and some are more serious than others.
Usually you get no warning, Moyer said. You space out and then there’s no memory of that time, she said. Generalized seizures affect both sides of the brain and may only last a few seconds.Moyer said sometimes her head will rock back and forth and she’ll bite her lip when she gets her seizure. It also can come with loss of consciousness, falling to the ground and muscle spasms.Focal seizures affect one area of the brain and can cause twitching or changes in taste and smell.
Other focal seizures begin in one part of the brain and spread to the sides.Moyer said you can’t just pick up where you left off before the seizure. Sometimes, it takes hours of rest to recharge.”You’re really not there,” Moyer said. “You’re so confused afterward. It’s not something you can just snap out of if it to go back to what you were doing.”The medicines to control the seizures have been hard on her body. At 38, she has osteoporosis, and she can’t have children due to the years of taking the medications. She said some of the other side effects include vision problems and just feeling drowsy all the time.”It’s hard to push through, but that’s what we have to do,” she said.
Sudden death
It’s relatively rare, but epilepsy can be deadly.
Cindy O’Donnell of Fleetwood knows about how serious the disorder can be.O’Donnell’s son Rourke died suddenly in August 2014 at 27. He was diagnosed with epilepsy when he was about 2 years old and tried for years to manage the disease.Sudden unexpected death in epilepsy happens in just over one in 1,000 cases, according to the CDC, and it’s not talked about much in doctor’s offices or in general, O’Donnell said.Usually, the exact cause of death is not known, but issues with breathing and heart rhythm can be contributing factors.
There are some things people with epilepsy can do to reduce their risk, such as avoiding seizure triggers, limiting alcohol consumption and getting enough sleep, the CDC says.”It’s not something that happens often, but it can definitely happen,” she said of unexpected death from epilepsy.O’Donnell said she hopes to do good work in her son’s name, organizing a retreat for adults with epilepsy and trying to raise awareness about the resources available for families.She wishes she had known about the 24/7 epilepsy nurse phone line that’s available through the national Epilepsy Foundation. Support groups can also help, she said.
Never give up
O’Donnell said finding the right medications can be a struggle for people with epilepsy. Many of the drugs that are supposed to curb seizures come with nasty side effects that affect mood, behavior, weight and much more.
Rourke had tried those medications. He also used a high-fat diet that helped control his seizures for a while, but the diet was not sustainable over the long term.A surgery to remove part of his left temporal lobe controlled his seizures for three years. A second one was unsuccessful.Despite his health challenges, her son received his bachelor’s degree from Alvernia University and was studying to get his master’s degree from Wesley Theological Seminary in Washington, D.C., at the time of his death.”My son was very brave, and never let his epilepsy deter him from achieving his goals,” his mom wrote in a letter about National Epilepsy Awareness Month.Moyer and Rourke were friends, and they shared many experiences with epilepsy, she said.
They had the same neurologist and had similar brain surgeries.”It was very hard,” Moyer said. “He was such a good friend. When people have gone through it, those people are like family. When you say you understand, we truly understand. Rourke was so smart, and he had so much going for him. We need more of those people around. I think about him every day.”Moyer said living with epilepsy changes everything. It’s very hard to hold a full-time job when you don’t know when your next seizure is coming. Driving is out of the question for the same reason because you never want to hurt someone else.
The medications can help some people, but don’t work for about a third of those with epilepsy.Still, despite those challenges, it’s important to keep fighting, Moyer said. She said she believes research could lead to a big breakthrough. The biggest hope is a cure.”I don’t give up,” she said. “I’ve lived with it for 23 years. The advances have really come along. Even when I had surgery in 2008, some of these advances weren’t around. I think that’s very important to never give up.”
Epilepsy Awareness Month fundraisers
What: A fundraiser for Epilepsy Foundation Eastern Pennsylvania
Where: Isaac’s Famous Grilled Sandwiches, Village Square, 94 Commerce Drive, Spring Township
When: Wednesday, 5-9 p.m.
The restaurant is donating a portion of the proceeds from the night to the Epilepsy Foundation Eastern Pennsylvania. Customers should bring their event flyers to give to the server.
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What: Pancake breakfast and quilt raffle
Where: Dairy Queen, 5710 Perkiomen Ave., Exeter Township
When: Nov. 21, 8-11 a.m.
Tickets: $7
Support groups
Reading Hospital, Lancaster General and Lehigh Valley Hospital host support groups for people with epilepsy and seizure disorders.
For more information, visit the Epilepsy Foundation Eastern Pennsylvania website or call 215-629-5003.
