COVID-19 Vaccines and Epilepsy: What you should know
Dr. Elizabeth Thiele, MD, PhD, and Director of the Pediatric Epilepsy Program at Massachusetts General Hospital addresses questions and concerns that people with epilepsy and their families have about getting vaccinated.
COVID-19 and Epilepsy Management
During this live stream, a panel of neurologists fielded audience questions on COVID-19 and how this disease may impact individuals with epilepsy. This live stream featured pediatric epileptologist Dr. Douglas Nordli from UChicago Medicine, as well as neurologist Dr. Jeffrey Loeb and neuroimmunologist Dr. Michael Carrithers from the University of Illinois at Chicago.
Healthcare Trends and Working with Insurance
In this live stream, panelists update us on the latest research on COVID-19 and epilepsy management, as well as field questions from the community about the medical supply chain, expanded access to telehealth, and beyond.
This live stream featured Comprehensive Epilepsy Program Director and pediatric neurologist Dr. James Wheless from Le Bonheur Children’s Hospital, BlueCross BlueShield of Illinois Medical Director Dr. Tony R. Vancauwelaert, and Health Research Institute Leader at PwC United States Benjamin Isgur.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.
COVID-19 FAQs
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Is the COVID-19 vaccine safe for people who have epilepsy?
So far, the data indicates that the FDA-approved (Pfizer*) and FDA-authorized vaccines (Moderna, Johnson & Johnson) are safe for people with epilepsy. We encourage all eligible people to get vaccinated against COVID-19, including people with epilepsy.
Before receiving a COVID-19 vaccine, talk to your epileptologist or primary care physician about specific concerns you may have. Patients should also inform their vaccination provider about relevant medication information, including their epilepsy diagnosis, allergic reactions to vaccines, if you are pregnant/nursing or plan to become pregnant, and all medications you are currently taking.
*On August 23, 2021, the FDA gave full approval to the Pfizer COVID-19 vaccine.
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Should I avoid taking my anti-epileptic medications before or after getting the vaccine?
You should continue taking your anti-epileptic medication as prescribed. There is no evidence to suggest that the COVID-19 vaccine interferes with anti-epileptic medication. For medication-specific questions, or questions about starting and stopping treatments, consult your prescribing physician.
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Will I experience worse side effects from the vaccine if I have epilepsy?
Many vaccine sites will monitor you for 30 minutes after receiving the vaccine to ensure there are no immediate and severe reactions. There is no evidence to suggest that people with epilepsy will experience “worse” side effects than a person without epilepsy.
Reported side effects include soreness at the injection site and flu-like symptoms, such as head- and muscle-aches, chills, fever, and fatigue. The severity of each side effect may vary from person-to-person, as well as vaccine-to-vaccine. Patients who experience seizures triggered by fever may want to discuss a seizure action plan with their epileptologist. Consult with your doctor if you have specific concerns about your reaction to vaccines.
In the rare occurrence that severe side effects are experienced after vaccination, including increased seizure frequency, please report them to the CDC: https://vaers.hhs.gov/index.html.
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Is it safe for children with epilepsy to get vaccinated?
We encourage all eligible people to get vaccinated against COVID-19. The data indicates that the FDA-approved (Pfizer*) and FDA-authorized vaccines (Moderna, Johnson & Johnson) are safe for all children and teens ages 12 and up, including those with epilepsy. Check with local officials to confirm eligible age groups in your area.
Clinical trials using lower dosing are currently being conducted on children 6 mos. to 11 years of age. Results are expected in early Fall, with the hope that children ages 5 through up to 11 years of age will have Emergency Use Authorization shortly thereafter. The intent is that children 6 mos. to age 5 would become eligible soon after the older children.
*On August 23, 2021, the FDA gave full approval to the Pfizer COVID-19 vaccine.
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Is one vaccine safer than the other?
There is no evidence which suggests that any of the FDA -approved or – authorized vaccines are safer than the others, though reported side effects may vary from vaccine-to-vaccine.
Vaccinations, in general, may cause fever, and elevated fevers may (rarely) cause seizures. There is no evidence that suggests the COVID-19 vaccines put people with epilepsy at a higher risk for seizures or side effects. Patients who experience seizures triggered by seizures may wish to consult with their epileptologist about a seizure action plan that includes consideration of rescue therapies.
If you are experiencing extreme negative side effects or an increase in seizures after vaccination, please speak to a medical professional right away.
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Is the Johnson & Johnson vaccine safe for people who have epilepsy?
In April 2021 there was a concern that the Johnson & Johnson vaccine could cause a blood clot in extremely rare cases. This was not connected to people with epilepsy; however, a person who develops blood clots to the brain may develop seizures. Based on currently available data, there is no evidence that the majority of people with epilepsy are at a higher risk for seizures or blood clots after vaccination.
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What is the recommended timing between doses of the vaccine?
While the Johnson & Johnson vaccine is a single dose, both the Moderna and Pfizer vaccines are two-doses, given at specific intervals.
- Those who receive the Moderna vaccine must wait a minimum of 28 days before they are eligible for their second dose. You must get your second Moderna dose within 42 days of receiving your first dose, otherwise you must re-start the process.
- Those who receive the Pfizer vaccine must wait a minimum of 21 days before they are eligible for their second dose. You must get your second Pfizer dose within 42 days of receiving your first dose, otherwise you must re-start the process.
Most physicians and vaccination sites will schedule your second appointment while you’re being monitored after the initial vaccination. During that time, you may ask them about specific considerations or concerns you may have around the timing of the second dose.
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Will I need a booster shot for my covid vaccine? And is the timing different for someone with epilepsy than the general population?
On August 18, 2021, United States health officials recommended COVID-19 booster shots for people who received the Pfizer or Moderna COVID-19 vaccines. The booster shots would be administered eight months after an individual has received their second dose of either vaccine.
A booster can be useful if medical professionals determine that current vaccines will last longer with an additional dose, or if it might be effective against a specific variant. This page will be updated with the latest information as soon as it becomes publicly available.
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Are individuals with epilepsy at increased risk of infection or developing a severe case of COVID-19?
Individuals with epilepsy who don’t have additional health issues are not at a greater risk of contracting COVID-19 compared to the general population. In addition, these individuals are not at a greater risk of having a severe case of COVID-19.
People with epilepsy are considered high-risk if they also have diseases restricting mobility, respiratory conditions (including asthma), diabetes mellitus, hypertension, severe heart disease, impaired immune function due to underlying conditions or drug treatment and older age, particularly when associated with frailty.
In addition, patients on immunosuppressive therapies, such as ACTH (acthar), steroids, and Cellcept, are also at an increased risk. Learn more about who is at risk from the CDC.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
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Are children with epilepsy at greater risk?
As of now, medical professionals don’t have experience to have a firm answer but given what we do know about seizures in children, there are subgroups of children who tend to be more susceptible to fever-induced seizures. So, while this occurrence isn’t specific to COVID-19, we know that children who are predisposed to having febrile or fever-induced seizures tend to be under the age of six. At this point, we can’t say it’s specific to COVID-19, rather it’s just associated with febrile illnesses.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
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Does COVID-19 worsen seizure severity or frequency?
According to current evidence, there is a low risk of the coronavirus causing seizures to become more severe in people with epilepsy who are infected with the SARS-COVID 2 virus. However, researchers have stated that, when infected with other forms of coronavirus, people with epilepsy may experience altered seizure frequency associated with fever, or more severe seizures.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
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Why does the CDC list people with epilepsy as being in the high-risk category?
While the CDC has not commented on their reasoning behind listing epilepsy as a COVID-19 risk-factor, pediatric neurologist Dr. Douglas Nordli suggests that this may be because of the potential impact on seizure frequency. In addition, neuroimmunologist Dr. Michael Carrithers notes that the CDC may have included epilepsy out of an abundance of caution, as science is still working to gather data on this virus.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
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Are there shortages of antiepileptic drugs due to manufacturing issues?
To look up the availability of a specific medication, head to the FDA’s website.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
[Update: August 5, 2021] Celontin, a prescription drug indicated for the control of absence seizures, may be in short supply from August 2021 through the end of September 2021. Do not stop taking Celontin without speaking with your physician. Contact your health care provider to make a plan in case of a shortage.
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Are there concerns with some patients being switched to the generic form of their medications due to availability?
Dr. James Wheless says neurologists often advise that patients taking generic immediate-release medications is fine, though patients should try to use a generic made by the same manufacturer to maintain consistency. He recommends working with your pharmacy to stock the same generic.
That being said, Dr. Wheless went on to say that, for patients on extended-release or long-acting antiseizure medications, it is “critically important” to stay on the same generic, if they opt to use a generic.
You can check medication available through the FDA website.
Reviewed by Dr. Dan Lowenstein, 4/28/2020
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How can parents manage their children’s anxiety, particularly those who have a developmental disability?
The COVID-19 pandemic has thrown many routines off track, which can be very anxiety provoking for children and adults alike. Establishing a new daily routine with scheduled activities like walks can help ease stress. Designating blocks of time for children to do homework, finish chores, take family walks, and eat meals is a great way to structure the day and provide consistent ways to get out anxious, idle energy.
The CDC provides information and resources for parents looking to manage their child’s stress of their own.
Reviewed by Dr. Dan Lowenstein, 4/28/2020