COVID-19 and Epilepsy
Available data suggests that people with epilepsy alone or with seizures as their main symptoms do not have a higher risk of getting COVID-19. We encourage you to learn more about COVID-19 symptoms, safety, treatment, and risk factors that may affect your immune system when living with epilepsy.
Learn More
Download the COVID-19 and Epilepsy FactsheetThe Epilepsy Foundation and our nationwide network of local organizations are here to help before and after an emergency.
- Information specialists working our 24/7 Helpline keep in touch with local Epilepsy Foundations and update our database as new resources are identified and created.
- Call 1-800-332-1000 (en Español 1-866-748-8008) for up-to-date information on services available near you.
Preparing For Any Emergency
Preparing for potential emergencies such as COVID-19 is part of life for all of us. Whether you’re preparing for natural disasters, extreme weather conditions, or medical emergencies, it is important to be ready for anything.
Learn More:
Emergency PreparednessBe prepared with the following steps:
- Keep an adequate supply of anti-seizure medication available.
- Make sure you have a seizure action plan and keep it updated.
- Ask your epilepsy team if you should have a rescue medicine to use in case of a change in seizures.
Are people with epilepsy at higher risk of developing COVID-19 (coronavirus)?
Epilepsy is a “family” of many different disorders that lead to seizures. Some people will have easily controlled seizures, have no other health problems, and become seizure-free on medications. Or, they may have epilepsy with occasional seizures but no other health problems. For these people, the available data suggests that just having epilepsy alone:
- Does not increase the risk of getting COVID-19
AND - Does not increase the severity of COVID-19
There is no evidence that people with epilepsy alone have a weakened immune system. They should not be considered “immunocompromised” and would not have an “immune deficiency” from having seizures. People with certain types of epilepsy, specific causes of epilepsy, or other health conditions may have factors affecting their immune system.
What Factors May Increase the Risk from COVID-19 for a Person with Epilepsy?
Regardless of seizure control, some people may have other health conditions that put them at higher risk from COVID-19. They may be taking medicines to control seizures that also affect their immune system (for example, ACTH, steroids, everolimus, immunotherapies). It is important to note that most seizure medicines do not affect the immune system.
Other neurological or developmental issues can affect immunity. People in these situations are at greater risk of developing more severe symptoms with viral illnesses.
Other medical problems could place someone at higher risk of developing more severe symptoms with COVID-19, such as those with:
- Problems swallowing or frequently inhaling food or liquids into their lungs (higher risk for pneumonia)
- Diabetes or underlying heart or lung problems
- Intellectual and developmental disabilities
No matter your situation, it is important for anyone with epilepsy to talk to their treating healthcare provider about their individual risks and if any specific medical precautions are needed.
How do we protect ourselves from getting sick?
Follow the advice of the CDC (Centers for Disease Control) and your health care providers to help slow down the spread of COVID-19.
Below are common-sense tips from the CDC:
- Make sure you’ve gotten your COVID-19 vaccines and a flu vaccine.
- Wash your hands regularly to prevent the spread of germs.
- Avoid close contact with people who are sick.
- Avoid touching your eyes, nose, and mouth.
- Stay home if you are sick and call your healthcare provider first if you need an appointment.
- Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
Extra precautions for people at higher risk:
(Note: These precautions are not necessary for people with epilepsy who are not at higher risk).
Below are extra precautions people at higher risk of severe COVID-19 can take to protect themselves:
- Talk to your healthcare team for specific recommendations.
- Stay home if reasonable.
- If another member of your direct family who lives with you becomes ill:
- Can they stay with someone else? If not possible, each person should have their own room, use separate bathrooms, and wash their hands frequently.
- Visit the CDC recommendations on what to do if you are sick or caring for someone.
- If you have help come into your home, follow common sense and make sure everyone is following good health practices. Talk to the agency responsible for the people coming into your home so you know what to expect and can share your concerns.
- Create a back-up plan for help in the home.
What should I do if I think I have COVID-19?
Symptoms of COVID-19 may be similar to the flu or common cold. Symptoms can include fever, cough, or difficulty breathing, loss of smell, sore throat, and cold-like symptoms. Follow CDC guidance for what to do if you think you may have COVID. If your seizures increase, call your epilepsy team or neurologist.
Treatments for People Who Are sick with COVID-19
Oral Medications
Nirmatrelvir with ritonavir (PaxlovidTM) has been FDA approved for the treatment of COVID-19 infection. It may be prescribed in other settings. Your healthcare provider will decide whether this treatment is right for you based on your medical history and the severity of your infection. Important considerations for people with epilepsy regarding the use of Paxlovid include:
- The effectiveness of Paxlovid decreases for those taking the following anti-seizure medications: carbamazepine, phenobarbital, phenytoin or primidone.
- Paxlovid may increase the blood concentration of many anti-seizure medications, including: carbamazepine, clobazam, clonazepam, diazepam, ethosuximide, everolimus, felbamate, lacosamide, lamotrigine, oxcarbazepine, perampanel, stiripentol, tiagabine and zonisamide.
Talk to your doctor or pharmacist for any possible medication interactions. People with epilepsy should contact their healthcare provider to monitor for any symptoms that could indicate higher blood levels of anti-seizure medications while being treated with Paxlovid. Other treatment options are available.
The FDA also issued an EUA for molnupiravir (LagevrioTM) for the treatment of mild to moderate COVID-19 in adults. This drug does not have any interactions with anti-seizure medications and could be an alternative to Paxlovid. However, Lagevrio appears to be less effective in treating COVID-19 and cannot be used in pregnancy.
Intravenous (IV) Medications
The FDA has approved remdesivir (VekluryTM) an intravenous (IV) antiviral drug for treatment of COVID-19. It is approved for adults and children that weigh at least three pounds who are in the hospital or not yet hospitalized. There is no data on anti-seizure medication interactions with Veklury at this time.
Preventative Medication for Use Prior to Exposure of COVID-19
There are no preventative medications currently available.
Following the advice of the CDC is the best way to protect yourself before exposure to COVID-19.
Other Frequently Asked Questions
I have tested positive for COVID-19. How do I manage my epilepsy?
Follow basic seizure first aid and make sure others around you know how to help when a seizure happens.
- Know the 3 steps to seizure first aid – Stay. Safe. Side.
- Most seizures are not emergencies and can be managed at home with seizure first aid.
- Be extra careful taking your anti-seizure medication – don’t miss any doses.
- You may be out of your usual routines. Set up a reminder system that will work for you. Some ideas to consider:
- Set an alarm on your phone.
- Use a pill box.
- Use a text reminder app or seizure diary
- Use sticky-note reminders.
- Ask someone to remind you when to take your medication.
- Use a checklist to make sure you took them.
How do I stay in touch with my healthcare team?
Even since the end of the public health emergency, many healthcare providers have continued to provide telehealth services. This is especially helpful for people with epilepsy who may not have reliable transportation to appointments or do not have a license. Before scheduling a telehealth appointment, check with both your doctor and your insurance company to make sure that telehealth services are still offered.
Does autoimmune epilepsy increase my risk for severe COVID-19?
A person taking certain medicines to treat autoimmune epilepsy may be at higher risk for serious COVID-19 symptoms. These include steroids and immunoglobulin. The immune system is critical in helping us fight infections and inflammation in the body and brain. Talk with your healthcare team if you have autoimmune epilepsy or are undergoing immunotherapy.
Can COVID-19 increase the risk for early death?
To our knowledge, there is no credible evidence that COVID-19 increases the risk for sudden unexpected death in epilepsy (SUDEP). However, regardless of whether a person has epilepsy or not, COVID-19 does carry a risk of complications and even death. People should do everything they can to avoid exposure to the virus and pay attention to seizure control.
What testing is available to tell if I have COVID-19?
There are several different types of COVID-19 tests. The most common type of test swabs the inside of your nose. The cells in the mucous are tested to see if genes from the virus are present.
- Rapid tests are the most common form of testing. They can offer results in 15 minutes or so.
- A positive test means you are or were infected with the virus.
- People may have a positive test but not have symptoms of being sick with COVID-19.
- If your test is positive, you may be able to spread the virus to other people.
A test can stay positive for a long time in the nose, even if the person has recovered from being sick. If you have a positive test result but no symptoms, talk to your healthcare team. They may tell you to stay home away from other people.
What is an antibody test and when should a person get this done?
An antibody test can tell if you have been infected with COVID-19 in the past. It measures the body’s response to the virus and not the virus itself.
- Antibodies are made by the body to help fight off the disease. They start showing up in the body about 10 to 15 days after a person gets infected.
- An antibody test will probably stay positive forever if you have had COVID-19. It’s a good way to find out how many people have been infected in the past.
Does the use of seizure medicines increase the risk of COVID-19 infection?
There is no evidence that using anti-seizure medicines increases the risk of COVID-19 infection, except for ACTH, steroids, everolimus, and immunotherapies. If you have any questions about the medicine you take, do not stop taking it - talk with your doctor about your concerns.
- People with seizures and epilepsy should make sure they take their medicine regularly and as prescribed at all times.
- Make a plan with your healthcare team about what to do if you miss any doses.
Do any medicines for COVID-19 interact with seizure medicines?
Paxlovid may increase the blood concentration of many anti-seizure medications. These include: carbamazepine, clobazam, clonazepam, diazepam, ethosuximide, everolimus, felbamate, lacosamide, lamotrigine, oxcarbazepine, perampanel, stiripentol, tiagabine and zonisamide.
Talk to your doctor or pharmacist for any possible medication interactions. People with epilepsy should contact their healthcare provider to monitor for any symptoms that could indicate higher blood levels of anti-seizure medications while being treated with Paxlovid. Other treatment options are available.
It’s critical that no one change their seizure medicine because of a potential drug interaction without talking with your healthcare provider.
- Remember, possible drug interactions do not mean you can’t use your medicine.
- Sometimes it means that the dose of medicine may need to be changed or that drug levels need to be checked more often. Other times it may suggest who should or should not use a medicine.
If you are being treated with a medicine for COVID-19, talk to your healthcare team – including your epilepsy specialist.
What if I have other questions about insurance coverage related to COVID-19 testing or treatment?
There may be changes in medical care coverage based on different situations. Talk to your healthcare provider or insurance company if you have questions.
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More Resources Related to COVID-19
- American Academy of Neurology, COVID-19 Neurology Resource Center
- American Red Cross, 1-800-RED-CROSS
- Developmental and Epileptic Encephalopathies-Project (DEE-P) Connections, COVID-19 webinars
- International Bureau for Epilepsy, COVID-19 & Epilepsy Information
- Patient Advocate Foundation resources for chronic and serious illnesses
- U.S. Centers for Disease Control and Prevention (CDC) with COVID-19 resources in Spanish
- U.S. Equal Employment Opportunity Commission (EEOC), guidance on pandemics in the workplace
- U.S. Food and Drug Administration (FDA), Frequently Asked Questions for patients about COVID-19
Resources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures Helpline
Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
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