Sharing her story, ready to help
Oak Mountain resident Lindsey Moss Wideman prepares for next step of her epilepsy journey
Lindsey Moss Wideman has been living with epilepsy almost her entire life.
Now 27, she was diagnosed at age 3 after she began having nocturnal seizures.
“During the night, I began leaning forward and rocking back and forth and also doing this thing with my jaw,” Wideman said. “My parents took me to the hospital, and they figured out I was having nocturnal seizures.”
Growing up, Wideman was on a variety of medications. She said she doesn’t remember much of her childhood due to the amount of medicine she had to take. When she was around 12, her doctor took her off the Topamax medication, and she said that made a huge difference.
“I had an appointment with my doctor in Huntsville and when she asked me how I felt, I answered that it finally felt like I was alive again, which made my mom cry,” she said.
Her health improved for a while after that, but the seizures never went away completely. Wideman said it was difficult when she turned 16 and her friends began driving. In order to drive, she had to be six months seizure free.
“If I don’t get enough sleep, it causes seizures; stress causes seizures,” she said. “There are so many variables, it’s not just medicine that keeps them confined.”
Starting a family
A 2013 graduate of Spain Park High School, Wideman grew up in Eagle Point and Greystone. She met her husband, Josh, when they were both working at Riverview Animal Clinic as vet technicians. After dating for a year, the couple married and moved to Chelsea. The following year, they welcomed their daughter, Charlotte.
“Being pregnant made my seizures 100% worse,” Wideman said. “I didn’t even think about that when I got pregnant. I was taking 20 pills a day, and she was taking in half, so I was only getting half. Being on all the medicine, during the third trimester, I began having seizures during the day.”
Wideman was induced at 32 weeks. Charlotte was born healthy, weighing 6 pounds and 7 ounces. Wideman said she and her husband were extremely surprised and blessed.
While the couple would like to have more children, Wideman said they would choose not to if a second pregnancy would be as difficult as the first.
“I hope it does get better so we can, but if not in God’s will, we are blessed to have Charlotte,” she said.
As a new mom, she continued having violent seizures during the night, especially due to lack of sleep. Some were even so violent that she fell off bed, hitting her head. While they don’t happen every night, Wideman said they continue to happen at least twice per week. There are no warning signs before the seizures, and Wideman said she doesn’t know when they are happening. Sometimes she knows she had one the next morning by the way she feels.
The path to surgery
After giving birth, Wideman was now on the path to surgery, which she had always wondered if it would be an option.
In November 2020, she went into the hospital for a week for EKG testing on her brain and had plugs attached to her head to monitor her seizures to find out the location of the hot spot.
“I thought I would have a good option of possibly being a surgery candidate, and they only do surgery for candidates who have an idea of being seizure free,” she said.
In May of this year, Wideman went in for brain surgery. Her head was shaved and 19 holes were drilled through her skull into her brain. Probes were inserted into the holes to locate the origin of the seizures. During her two-week hospital stay, she continued to have seizures, was sick and had what she describes as the worst headache of her life. However, the probes were able to locate the spot in her brain where the seizures originate: in the area that controls speech, the left side behind her eye.
She said because the spot was found, she’s glad she had the surgery. However, she wouldn’t do it again.
“When I was younger and my brain was trying to form, it did not form correctly. That left spot in my brain irritates it, and that’s what causes my nocturnal seizures. That dead spot in my brain doesn’t have any function but has been causing seizures my whole life. No function is a good thing. Even though it’s in my speech area, I can’t lose my speech.”
After two months of waiting, Wideman found out she was a candidate for Laser Interstitial Thermal Therapy. LiTT is a minimally invasive surgery for patients with drug-resistant epilepsy that results in seizures that don’t respond to medication. A laser will be inserted into her brain and will heat to a certain temperature to kill the cells in the area where the seizures originate.
As of press time, Wideman was scheduled to go to Atlanta Oct. 27 to get a scan done before the surgery but still didn’t have a surgery date set.
Wideman continues to take four medications daily. Even if the procedure is successful, she will continue to be on seizure medicine for one year as her brain heals.
“Hopefully still taking medicine and not having any seizures will be an indication that when I come off my meds I will be seizure free,” she said. “I don’t want to get my hopes up too much since it’s not guaranteed. But this does give me a 75% chance of my well-being being better, which would improve my life a lot. It would be awesome if I could come off medication.”
Help from family, helping others
Wideman said she wouldn’t be able to get through all of this without her family.
She, Josh and Charlotte moved from their home in Chelsea to Oak Mountain in January. She and her older sister built their homes next door to each other, so she is close by to help when Wideman is unable to drive. Her parents are also nearby in Greystone.
She met Sara Franklin, Epilepsy Foundation of Alabama’s executive director of Community Engagement and Partnership, after their parents connected the women. Wideman has participated in the annual epilepsy walk and has raised almost $1,000 for the foundation through a birthday fundraiser on Facebook.
She said she is glad that epilepsy is getting more attention than it has in the past.
“I told Sara if anyone needs help talking about that, I’m interested,” Wideman said. “I feel like God gave me this story so I can talk to people if they ever need help. I can talk to people about surgery and how that went for me. I’m just here because this has happened to me my whole life. I understand how others feel.”
As for the upcoming surgery, Wideman said she sees it as a win either way, because she will always know she tried. She said she will be thrilled if it is a success, and if not, she will just continue taking medication and dealing with it the rest of her life.
“It takes a lot of patience and a lot of waiting, but at least I’ll always know I won’t regret it. I always thought if I waited until I was older, it would be extremely hard to bounce back. I’m 27 right now and might as well go ahead and do it now while I’m young instead of waiting until I’m not older and wish I’d looked back.”
November is National Epilepsy Awareness month. For more information, visit the Epilepsy Foundation of Alabama at epilepsyalabama.org.