From Shame to Seizure-Free – Heather’s Epilepsy Journey

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From Shame to Seizure-Free – Heather’s Epilepsy Journey

High school can be a challenging time for most teens, but for Heather, it was particularly difficult. In 1997, then 17-year-old Heather became pregnant, and if that didn’t change her life enough, she began blacking out, completely losing blocks of time.

Not surprisingly, Heather’s periods of blacking out were distressing. She would wake up having no memory of what had happened and at times she would lose control of her bladder. Heather’s peers would make fun of her and believed she was faking the black outs. These black outs and lost chunks of time were, in fact, seizures, or a burst of uncontrolled electrical activity between brain cells that causes temporary abnormalities.

“When I was going to have a seizure, I would get nauseated; really sick to my stomach and dizzy. That’s the only way I can describe it,” Heather explained. “I was made of fun of at school for having them. After I’d have one I’d ask people what I would be doing during my seizure as I couldn’t remember.”

While receiving pregnancy care, Heather was told that it could be the pregnancy itself that was causing the seizures.

However, following the birth of her baby, the episodes did not stop, so Heather started to see a neurologist to try to get to the bottom of it. The neurologist diagnosed the black outs as epilepsy and worked with Heather until 2019. Through the years he tried many different medications and performed an electroencephalogram (EEG) which showed nothing obvious. Eventually, an MRI revealed a cavernous angioma in her brain.

Scans Reveal Malformations in Heather’s Brain

Cavernous malformations, which are also known as cavernous angioma, are small abnormal clusters of blood vessels that are filled with blood. They can appear anywhere in the brain, but most often occur in the supratentorial region, which includes the frontal, parietal, temporal, and occipital lobes. Cavernoma malformations in these areas of the brain can trigger seizures.

Through the years, Heather struggled with the seizures and the way they limited her. When her neurologist told her that she’d probably have to live with the seizures for the rest of her life, or until a new medication came along, she was devastated.

The seizures caused Heather a lot of shame and anxiety. When she would feel a seizure coming on she would run to the restroom so she could have privacy.

“I was scared and embarrassed and I didn’t want anybody to know I had epilepsy as I thought they’d think differently of me,” she said. “There was nothing I could do to stop it by myself. I had such a fear about what people would think. Other people don’t know what to do when a person is having a seizure.”

Heather had three children and continued trying to live as normal a life as possible. She had wanted to go to college to study nursing, but was concerned that she could have a seizure while caring for someone. Instead, she graduated with a bachelor’s degree in business.

A License to Drive Taken Away

Heather’s saving grace for many years had been having a driver’s license. But one day, she had a car wreck while driving and her license was taken away. Having a license had meant freedom and without one, she was stuck at home, at the mercy of others to take her places. She felt like a burden. Until that point, Heather had become used to living with the seizures, but losing her license was a huge blow.

Her mother suggested she get a second opinion so Heather was referred to OU Health neurologist Bhrugav Raval, M.D. Dr. Raval performed multiple tests including CT scans, MRI and VEEG, which encouraged Heather as she felt as though she was finally getting some help. She was then referred to OU Health neurosurgeon, Andrew Conner, M.D. for Laser Interstitial Thermal Therapy (LITT), which is a technique using a small laser to destroy unhealthy brain tissue including tumors forming deep within the brain.

Heather’s condition, which is rare and genetic, predisposes her to the development of multiple cavernomas in the brain. These types of benign blood vessel tumors tend to irritate the brain and cause seizures. She has many in the brain, however only one or two of them were causing the seizures. Prior to seeing Dr. Conner, Heather had been treated with multiple anti-seizure drugs without good control.

She underwent an extensive pre-operative work-up and initially the team thought that a specific cavernoma in the parietal lobe was causing the seizures. The cavernoma was ablated with LITT successfully, but Heather continued to have seizures.

The Team Doubles Down

Heather was discouraged that the procedure hadn’t resolved the seizures, but the OU Health epilepsy team was determined to help her. As the cavernoma that was destroyed with LITT didn’t resolve the seizures, Heather underwent bilateral stereo-EEG placed around her multiple cavernomas to figure out which other one was causing the seizures. A specific temporal cavernoma on the right side was identified, and in August 2022, Dr. Conner removed it via craniotomy. She has been seizure-free since.

For Heather, after so many years of medications and tests and procedures, she still could not believe that the surgery would actually resolve the seizures.

“I thought, I’ll probably go home and have a seizure, but I didn’t. I haven’t had one since and I’m so thankful,” she said.

Epilepsy is essentially a disease characterized by sometimes frequent seizures that are not provoked by other things, Dr. Conner explains.

“It’s like an electrical storm that starts in an area of the brain and spreads through the brain,” Dr. Conner said. “It’s really important to know where the seizures are coming from because seizures look different and they behave differently based on the area of the brain they are coming from.”

Knowing where the seizures are originating is vital to a successful surgery.

“Other doctors were unable to identify the specific cavernoma causing the seizures as they didn’t have the technology (stereo EEG or LITT) that we have here at OU Health,” Dr. Conner said.

Heather has been seizure free for 10 months and now has her driver’s license back.

“When I got my license back I got my freedom back. I can live a normal life,” she said.

Heather still has other cavernous angiomas, so she may have to stay on some medication out of caution as the others may cause a seizure, but for Heather, the successful surgery was the happiest day of her life.

“Dr. Conner is my hero, and not just him, but the whole team. When I went to see Dr. Conner after the surgery I went straight to him, and hugged him. I just feel so thankful,” she said. “I don’t know what I would do if I had to live that way for the rest of my life.”

Oklahoma’s Only Level 4 Epilepsy Treatment Center

OU Health is home to Oklahoma’s only level 4 Epilepsy Center. Learn more about care and treatment options for epilepsy or call (405) 271-3635 for information about epilepsy and seizure diagnosis and treatment.

Watch Heather’s story.