Has COVID-19 affected people with epilepsy?
Yes. It’s no secret that living through a pandemic is stressful. “We know that, in general, if people with epilepsy aren’t getting enough sleep—whether it’s worry, anxiety, stress about COVID-19, or wondering how to get medicines without going to the pharmacy—that can actually trigger seizures,” said James Wheless, M.D., in an interview* with Matthew Gavidia and published in the American Journal of Managed Care. Dr. Wheless is the director of the Le Bonheur Comprehensive Epilepsy Program and chief of the Department of Pediatric Neurology at the University of Tennessee.
What role can rescue medications play?
In a time when you may be trying to stay away from the ER, rescue treatments (fast-acting treatment for breakthrough seizures) may help some people control cluster seizures at home. “There are times when you have to go to the emergency room, so we’re not saying don’t ever go there,” said Wheless—but, he noted, rescue medications may help people with epilepsy deal with cluster seizures at home. Some rescue medications given via intranasal delivery may be administered by a partner or parent.
Has the pandemic advanced epilepsy care in any way?
Yes. According to Wheless, it has helped make it easier for people with epilepsy access a backup supply of medicines. “I really think we’ve got to give the patient a little bit more latitude,” he said. “Some [insurance companies] have been better about that, saying, ‘Oh, we only used to allow 30-day refills, we’ll give you 3 months now.’ I hope that continues because our patients really need to not have a sense of anxiety about obtaining baseline medicines.”
How can I remain positive?
According to Wheless, maintaining a routine may be helpful. “Find a time to get up, try and eat healthy, regular meals,” he said. “Try to get out and walk or do something during the day. Take your medicines on time, get to bed on time, but keep that routine. That’s really critical.” Some good ideas from others in the epilepsy community include getting outside for a socially distanced walk, meditating, connecting with friends and family virtually or from a safe distance, exercise, entertainment, volunteering from home, or creative activities like cooking or crafts. Also consider joining a social community through your local Epilepsy Foundation chapter’s social media channels.
Should I worry about going to the hospital ER?
No, you should never avoid seeking emergency care. Hospitals have contingency infection-prevention plans to protect you from getting COVID-19 if you need care for any reason. Still, as Wheless noted, rescue medication may be able to help some people without requiring a trip to the emergency room. Bottom line: Consider asking your doctor about rescue medications. But if you need emergency care, don’t avoid it. The benefits of receiving care far outweigh the risks.
*Excerpted from an interview with Matthew Gavidia that was coordinated by UCB and published in the May 2020 issue of AJMC.