• People with epilepsy should get the COVID-19 vaccine when it’s available to them.
• The likelihood of having a seizure from the COVID-19 vaccine is low.
• There is no need to time the COVID-19 vaccine around seizure activity.

Ever since the U.S. Food and Drug Administration (FDA) approved the first COVID-19 vaccines in December 2020 for emergency use, people living with epilepsy have had questions about whether these inoculations will be safe and effective for them.

On February 27, the FDA approved Johnson & Johnson’s COVID-19 vaccine, providing a third option to the Pfizer and Moderna COVID-19 vaccines. This new vaccine requires a single dose and works in a different way than the first two vaccines.

The Epilepsy Foundation updated its COVID-19 guidance on February 21, stating, “There is no evidence that persons with epilepsy are at higher risk of side effects after vaccination.” The organization also noted, “There is no evidence that this vaccination results in worsening of the epilepsy, or brain injury.

Because the vaccines are still relatively new, however, some MyEpilepsyTeam members may be curious about whether they should get vaccinated against COVID-19. To answer questions on this topic, MyEpilepsyTeam talked to Dr. Jonathan Edwards. Dr. Edwards is chair of the Department of Neurology at the Medical University of South Carolina.

The COVID-19 vaccines are so new that there is not yet any specific data on results or side effects in people with epilepsy. Do you believe people with epilepsy should consider getting one of the COVID-19 vaccines?

Absolutely. There’s no preference on which vaccine you should get — whichever one you can access, that’s the one you should get. This is one of the most common questions that my patients ask me right now, and a lot have been holding off, waiting until they can ask me whether the vaccines are safe before they get vaccinated.

One of the issues is that there's a lot of misinformation out there. That’s a tough thing to fight against, because bad information will spread through the internet more quickly than good information, and we all face that challenge. But the other thing that may give people some hesitation is the fact that the vaccine is new. And they may say, “Well, there may be things that we don't know about it.”

While the vaccine is new and there may be something hypothetical that we might not know about it, the virus is also new, so there is an equally likely chance that there may be some long-term problems from the virus that we don't know about.

What we do know is that this pandemic is quite serious. The infection is spreading, and it has killed 2.75 million people already. So, weighing what we know — that we have a deadly disease that's contagious and spreading — against the hypothetical possibility that there might be something that we don't yet know about the vaccine is important.

This is a great vaccine in terms of efficacy — but there are other reasons to get vaccinated that I think people don't talk about enough — and that’s to protect others as much as we’re protecting ourselves. It's an infectious disease, and if you get the infectious disease, you're one of the links in the chain, and you can give it to other people. When you're getting the vaccine, you don't just get it for yourself, you get it for your loved ones, you get it for your friends, you get it for every person you may come into contact with. So it's not just about the benefits for yourself, which are very, very real, but the benefits for the people around you as well.

If people with epilepsy have some seizure activity, should they still follow through with a vaccine appointment, or should they reschedule it?

The simple answer is: Get the shot. Even if you’ve had a seizure, don’t let that dissuade you from it, just get the shot.

A few MyEpilepsyTeam members have said they get seizures when they get a fever, so they’re nervous about getting vaccinated because some people get elevated temperatures after getting vaccines. Have you seen any evidence of this happening among people who have epilepsy?

I have not experienced a patient that has had a seizure because of getting the vaccine, but I have had patients that have had seizures because they got COVID. When you get a vaccine, most of the time, you don't get a fever — or you get a low-grade fever and you feel feverish for a brief period of time. But if you get COVID, you're talking about fevers for days to a couple of weeks, when you can get high fevers, and so the risk of that is much greater.

Can we guarantee that someone won't have a seizure after their vaccine if they sometimes get one? Absolutely not. But it's all about weighing the risks of those two things against the risks of COVID-19, and I advise anyone with epilepsy to talk to their health care teams if they have any questions about it.

Talk With Others Who Understand

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Are you living with epilepsy and wondering whether you should get the COVID-19 vaccination? Share your experience in the comments below, or start a conversation by posting on your Activities page.