Pandemic reassurance for people with epilepsy

By Kate Johnson

credit: filadendron/Getty Images

Epilepsy specialists may need to tackle some unnecessary anxiety among their patients, many of whom were misled in mid-March when the Centers for Disease Control and Prevention included epilepsy on a list of conditions that might predispose to worse symptoms of COVID-19.

Almost as soon as the CDC list came out, M. Scott Perry, MD, tried to mitigate the damage with a swift tweet: “Epilepsy is common and most healthy people with controlled epilepsy are probably at no more risk than others.” Dr. Perry is medical director of neurology, codirector at the Jane and John Justin Neurosciences Center, and medical director of the Genetic Epilepsy Clinic at Cook Children’s, Fort Worth, Tex.

 Jacqueline French, MD, professor in the department of neurology at New York University and chief medical officer of the Epilepsy Foundation, also sprang into action. “The Epilepsy Foundation actually engaged CDC around this point, as we knew of no data supporting a specific risk for people with epilepsy, and as a result they removed it from the site,” she said in an interview.

Retracting the message

But despite such efforts to reassure people with epilepsy, the CDC’s early messaging has perpetuated. In a survey of people with epilepsy conducted at the end of March, and published in June, researchers at Indiana University, Indianapolis, reported “70% of respondents indicated that they knew that the CDC has named people with epilepsy as a high-risk group for serious COVID-19 infection.” (Epilepsy Behav. 2020 Oct;111:107238. doi: 10.1016/j.yebeh.2020.107238).

“This is an encouraging result – the CDC’s classifications of high-risk groups appears to have been well-disseminated to this sample,” commented Wendy R. Miller, PhD, RN, and coauthors.

“I think that the initial listing of epilepsy among the high-risk groups may have contributed to some of the stress patients with epilepsy felt during the pandemic, but it was unlikely the primary contributor to any negative impacts on their overall health,” commented Dr. Perry. “More difficult early on was the change in daily routines, likely increased risk of disrupted sleep, some difficulty getting medications due to stay-at-home orders and fear of going out in public, and increased difficulty accessing care as we switched from in-person to telehealth visits.”

That’s been the experience of Lysa Lomax, MD, a neurologist and assistant professor at Queen’s University, Kingston, Ont. “I think many epileptologists have witnessed a trend in seizure exacerbation with an increase in ED visits and admissions to hospital,” she tweeted on Aug. 8, citing a Chinese survey reporting that 8.6% of patients had seizure exacerbation (Epilepsia. 2020 Aug 6. doi: 10.1111/epi.16635).

“I am indeed concerned that my patients have experienced seizure exacerbation due to stress, decreased physician visits, and medication shortages during the COVID pandemic,” she said. “Many of them try to avoid seeking medical attention at a hospital due to infection concerns.”

Some negative consequences, some positive

While stress-related seizure exacerbation has been a concern during the pandemic, Dr. French said, “the impact can go both ways. There are some people whose seizures have gotten worse because they’re not sleeping well and they’re anxious, but there are other people whose seizures have actually gotten better because they don’t have the stress of getting up early and going to work every day, and maybe more capability of taking the medicine properly.”

In Dr. Perry’s pediatric population, “most have had better-controlled seizures. Some of this may be due to lack of illnesses now that kids are staying home from school and have less exposure from going out in public for doctor visits, etc. For some kids, there may be less stress since they are out of school or doing home-based learning,” he noted.

Dr. M. Scott Perry

Dr. Jacqueline French

Dr. Wendy R. Miller

Dr. Lysa Lomax

Potential enduring effects

Like other specialties, most epilepsy programs have harnessed the opportunity of telemedicine to optimize patient care during the pandemic. In April, the Epilepsy Foundation issued a collection of consensus statements and recommendations for patients and their clinicians that focused mainly on the scenario of home self-care during the extreme lockdown.

Acknowledging the lifting of that lockdown in most areas now, Dr. French said there are aspects of the recommendations which will endure.

“Virtual doctor visits are a good thing and hopefully that will continue even after the pandemic is over because for people with epilepsy it’s a great boon not to have to make their way to the epilepsy center to see their doctor – this expands their access.”

She added that having rescue mediation on hand is always a good recommendation “because under any circumstances why would you go to the hospital if you don’t have to? Being admitted to the hospital still comes with major downsides including – no matter where you are in the country – the ability to be visited by your loved ones is significantly reduced.”

credit: valentinrussanov/Getty Images

The American Epilepsy Society issued a statement in early March advising patients to stockpile a supply of their antiepileptic medications, but fortunately, supplies have not been impacted by the pandemic, said R. Edward Hogan, MD second vice president of AES and a neurologist at Washington University, St. Louis.

“The main practical concern in medication adherence and compliance has been changes in practical routines of obtaining care and getting medication refills,” he said in an interview. However, he added that he has not seen seizure exacerbation in his own patient population. “So far, fortunately, the St. Louis region has been relatively spared from COVID-19, and we did make extra efforts to be in touch with our patients to make sure they continued their antiseizure medications, and had adequate supplies.” 

As for people with epilepsy who contract COVID-19, Dr. Hogan recently coauthored a review that found no evidence for seizure worsening with mild COVID-19, though perhaps some risk in those with severe infection (Epilepsy Currents. 2020 Aug 24. doi: 10.1177/1535759720948549). “In more severe COVID-19 cases, other systemic problems such as abnormal blood clotting can cause severe neurologic complications, including stroke,” he said.

Dr. French reported receiving support, research grants, and other funds from numerous sources. Dr. Hogan is a consultant with Neurelis, and disclosed institutional sponsorship of clinical trials with Neurelis, Biogen, Eisai Pharmaceuticals, and Engage Therapeutics. Dr. Perry reported advising and consulting with Greenwich Biosciences, Zogenix, Stoke Therapeutics, Encoded Therapeutics, and Biocodex; serving as a speaker for Zogenix and Biocodex; and receiving research support paid to Cook Children’s by Marinus, Zogenix, Ovid, Greenwich, and Stoke. Dr. Lomax has no disclosures.

Dr. R. Edward Hogan

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