If you’re living with epilepsy, you may be concerned about a vaccine — like one of the COVID-19 vaccines — triggering seizures. There have been some reported side effects of seizures in people who received the COVID-19 vaccine during the pandemic. This article will explain more about the risk for seizures with vaccines, specifically for people already living with epilepsy.

Types of COVID-19 Vaccines

There are currently four COVID-19 vaccines approved by the U.S. Food and Drug Administration (FDA). The most strongly recommended are the Pfizer and Moderna vaccines, which both deliver a molecule called messenger RNA (mRNA). These mRNA vaccines consist of a tiny piece of mRNA that’s injected into your muscle. This mRNA molecule is like a blueprint that holds the instructions for your body to make a harmless part of SARS-CoV-2 virus spike protein. That way, your immune system can learn to recognize and defend against SARS-CoV-2 (the virus that causes COVID-19) during a real infection.

Johnson & Johnson produces a viral vector vaccine. Similar to the mRNA vaccines, this type of vaccine uses a safe version of a different virus to bring instructions to your body. This vaccine is not as highly recommended as the mRNA vaccines and should only be used in certain situations.

Novavax produces another protein-based vaccine, in which a harmless protein from SARS-CoV-2 is injected into the body to train your immune system.

The Centers for Disease Control and Prevention (CDC) recommends that most people receive either the Pfizer or Moderna vaccine. You can speak with your health care provider if there are additional factors to consider, such as a previous severe reaction to one of the mRNA vaccines.

Vaccination for People Living With Epilepsy

In some parts of the world, people with epilepsy are considered a COVID-19 vaccine “restricted group.” This means some people with epilepsy are advised against receiving the COVID-19 vaccine by their health care providers.

In addition, some people who have received the COVID-19 vaccine have reported seizures as a side effect. In one study published in Epilepsy & Behavior, 2.5 percent of participants with epilepsy reported worsening of their seizures after they received the first dose of a COVID-19 vaccine. Importantly, many of these people already had ongoing seizures before receiving the vaccine. This suggests that having unmanaged seizures before vaccination puts you at risk for worsening seizures after vaccination.

If you’ve heard these or similar statements, you may be worried about your risk of having more seizures if you choose to be vaccinated against COVID-19. Be sure to ask your health care provider and neurologist about your risk for seizures as a person living with epilepsy. This could be different than a risk for seizures among the general population.

Several MyEpilepsyTeam members have similar concerns and want to hear about others’ experiences getting vaccinated. Some members shared positive experiences. One said, “I have had all four vaccinations and was fine.”

Another shared, “I’ve had all COVID-19 boosters with no issues.”

However, another user said, “I feel that getting a COVID-19 shot definitely made seizures come on more so.”

Because seizure risk is so individual, it’s important to evaluate your specific symptoms. Work with your doctors at your epilepsy center to ease any anxiety you might have about COVID-19 vaccination risk.

COVID-19 Infection and Seizures

In addition to worrying about seizures after vaccination, MyEpilepsyTeam members also have questions about COVID-19 itself causing worse seizures. Members who have been vaccinated against COVID-19 — and those who have declined the vaccine — chimed in on the conversation.

One member asked, “Has anyone gotten sick from COVID-19 and found that there was any effect on their seizures?”

While there was a variety of responses, several members shared negative effects of the virus on their epilepsy symptoms, including seizures. For example, one person said, “Since getting COVID-19, my seizures have been off the rails.”

While there is a very small risk for seizures after getting vaccinated, there are well-known, serious effects from getting sick with COVID-19. The SARS-CoV-2 virus can cause severe disease, including seizures, in people who aren’t vaccinated. People with epilepsy are at higher risk for developing severe COVID-19 disease from infection. Your risk is increased even more if you aren’t vaccinated.

Seizures are not listed as a severe side effect of COVID-19 vaccination by the CDC. Because all approved COVID-19 vaccines protect against severe illness, the CDC and other health organizations, like the Epilepsy Foundation, recommend everyone 6 months and older — including people with epilepsy — get vaccinated after a discussion with their health care provider.

Reports of Seizures in Vaccinated Individuals

Several studies throughout the world have investigated reports of seizures in people who have had a COVID-19 vaccine. The CDC estimates that, per year, about 3 in 100,000 people who receive a COVID-19 vaccine experience seizures. These seizures occur within four weeks of the vaccine dose and are “de novo” — meaning they are the first seizures these individuals have ever experienced.

These events are reported in the CDC’s Vaccine Adverse Events Reporting System (or VAERS). This system documents any possible side effect experienced by people getting a COVID-19 vaccine or other immunization. Importantly, that study reported only new seizures, not worsening of existing seizures in people with epilepsy.

Additional studies have looked at whether COVID-19 vaccines worsen epilepsy symptoms. In Japan, people with epilepsy were monitored after various dosages of the COVID-19 vaccine. Of 282 vaccinated people with epilepsy across four hospitals, 16 people showed worsening of their seizures. Most of these seizures appeared within 48 hours after getting the vaccine. However, after six months, no lasting side effects were reported.

An Italian study determined that less than 8 percent of people with epilepsy showed signs of seizure worsening after receiving the COVID-19 vaccine. These individuals had a history of more severe epilepsy, resistant to current treatment.

These studies have found that already having existing or frequent seizures leads to a higher risk of having worse seizures after vaccination. It's important to note the studies don't show that COVID-19 vaccines are the direct cause of seizures. They only show an association of seizures with getting a vaccine for some people. The vast majority of those with epilepsy do not experience a change in their symptoms.

In general, it’s difficult to determine if the COVID-19 vaccine directly causes seizures or other epileptic symptoms. However, one study noted more neurological events occurred after the Johnson & Johnson vaccine compared to the mRNA vaccines. Ask your health care provider if the mRNA vaccines might be recommended as a less-risky option.

Risk Factors for Seizures in People With Epilepsy

Vaccine side effects for people with epilepsy are typically similar to those experienced by other recipients of the vaccine. These include discomfort at the injection site, fever, chills, fatigue, and headache.

One of the side effects of COVID-19 vaccines, as well as a symptom of COVID-19 infections, is fever. A high fever can make it easier for seizures to occur in people who are already prone to them. This may be the most important connection between the COVID-19 vaccine and seizure risk, and it is something to bring up with your provider.

Remember, the COVID-19 vaccines have gone through many clinical trials before becoming FDA-approved. In fact, the COVID-19 vaccines are under the strictest observation for safety in U.S. history. You can work with your health care provider and neurologist to better understand potential outcomes and work to reduce these risks — including the risk of seizures.

Advice for Getting Vaccinated Against COVID-19

Medical research suggests COVID-19 vaccines — along with other traditional vaccines — don't cause epilepsy, worsen its symptoms, or directly cause epileptic seizures. Generally, COVID-19 vaccines and treatments won’t negatively interact with anti-seizure medications. However, you should let your neurologist know if you’re being treated for COVID-19.

The CDC doesn’t prohibit people with epilepsy from receiving any COVID-19 vaccine (so long as you’ve had no adverse reactions to this or similar vaccines in the past). The COVID-19 vaccines have many benefits and much fewer risks to all people, including people with epilepsy, compared to having an actual COVID-19 infection. In fact, the rate of neurological events is significantly higher from contracting COVID-19 than from getting the COVID-19 vaccine. As with all vaccinations or treatments, it’s wise to consult your doctor or neurologist before making a decision.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 114,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy and epileptic seizures.

Do you have epilepsy, and have you received a COVID-19 vaccine? Share your experience and questions in the comments below, or start a conversation by posting on your Activities page.