You deserve a better quality of life with epilepsy. By making treatment goals and exploring new options for therapy, you can find the seizure control you need.
How to Overcome Epilepsy Loneliness When Seizures Don’t Stop
June 29, 2022Reading Time: 3 minutes
- Epilepsy can often leave you feeling disconnected from others — even your doctors — since it can be challenging to convey exactly what you’re experiencing.
- In addition to providing substantial seizure relief, the RNS System can help you feel connected to your care team through the data you help capture.
When seizures don’t respond to medications, it can often feel like life is on hold — with constant disruptions to your education, career, and relationships. Plus, there’s the challenge of trying to explain what you’re going through mentally and physically, not just to friends and family but also to medical professionals trying to help. It can leave you feeling alone, even when you have support.
Connecticut native Kimberly found herself in that position during seven years struggling with drug-resistant focal epilepsy. When she finally got the chance to receive the RNS System, the burden finally lifted. The epilepsy device started helping her collect daily data to share with her care team. Her doctors finally had direct evidence of what was happening in her head, while also guiding treatment that provided relief.
“It makes me feel like I am working with my doctors,” Kimberly says. “We’re learning about my seizures together, rather than me just trying to explain them.”
Before finding that connection, Kimberly, like many people with intractable epilepsy, had to endure a series of challenges.
Experiencing focal seizures for the first time
Kimberly’s epilepsy journey began far from home, in China. Motivated to help people from an early age, she had a found a way to combine her passions for education and travel with a post teaching English. Yet within a few weeks of arriving, she started experiencing a constant sense of unease and discomfort.
“I thought it was culture shock, so I tried to power through,” Kimberly says. “But it quickly became worse.”
During a gym workout, her mouth suddenly filled with a metallic taste and she began hallucinating. She managed to stumble onto an exercise mat before collapsing. It was her first seizure, with many more to follow.
Sometimes she maintained awareness — right-side numbness, twitching face, tightened throat, loss of breath — and sometimes not. Local doctors prescribed anxiety disorder medication, but her emotions started swinging from joy to depression, fear to outrage.
“I felt like I was losing my mind,” she says. It was time to return home.
Struggling with drug-resistant epilepsy and trying resection
Back in the United States, Kimberly continued to feel fearful and sleep-deprived, experiencing 30 to 60 seizures a day and auras filled with hallucinations. Doctors added medications for epilepsy, depression, bipolar disorder, and post-traumatic stress disorder.
It was not until more than a year later that she learned the cause of the seizures — autoimmune limbic encephalitis. Essentially her immune system was attacking her brain and causing inflammation.
Doctors brought some symptoms under control, but Kimberly continued to struggle with cognition and seizures. She still managed to enroll in a certificate program to teach English to non-native speakers and volunteered with a museum and a mental health advocacy group.
“I refused to let epilepsy control my life,” Kimberly says.
Living by then in the Bay Area, she lost consciousness, fell and suffered a fractured skull that brought her to UCSF Medical Center, a Level IV Epilepsy Center. To treat her epilepsy, surgeons suggested removing her left amygdala, hippocampus and part of her left insula, the areas that seemed to cause her seizures. The resection seemed to help at first. Despite some continued seizures, she felt happy and positive again, volunteering for a children’s hospital and an epilepsy foundation.
“I felt like my true self,” she says.
But the seizures soon intensified again — an EEG showed that they were starting in the remaining portion of the left insula and spreading across her brain. Eventually, the surgeons suggested removing the left insula and placing the RNS System, and Kimberly agreed.
Feeling empowered by RNS System data and achieving relief
Since starting neurostimulation, Kimberly has reduced her medications to two. She hopes to eventually lower even those doses.
Anytime Kimberly feels a seizure coming on, she swipes her head with a special magnet to record her brain activity. She uses the system’s electronic wand to transfer seizure data from her neurostimulator to a remote monitor and on to her doctors. Together, they review the results during office visits, giving her a sense of regained control and agency.
While Kimberly still experiences auras and some seizures, her care team has been able to block the seizures that would otherwise leave her unconscious.
“With a team of caring doctors and life-changing technology, I am no longer fighting epilepsy alone,” she says. “I’m no longer dwelling on the past and excited for all that’s to come.”
*Every person’s seizures are different and individual results will vary