Revised – April 3, 2020
Originally published February 28, 2020. Revision 1 on March 4, 2020. Revision 2 on March 14, 2020. Revision 3 on March 19, 2020. Revision 4 on March 23, 2020. Revision 5 on March 31, 2020. Revision 6 on April 3, 2020.
The April 3, 2020, revision adds video clips from an earlier Facebook Live and adds information about wearing a mask or scarf.
While most people who may develop COVID-19 (novel coronavirus) will have only mild to moderate symptoms, some people may need to see a health care provider or be hospitalized. The focus by the Centers for Disease Control and Prevention (CDC), and all of us, is on slowing down the spread of COVID-19 and ensuring people can receive the care they need. The word “community mitigation” is used to describe the process of slowing down the spread of the virus. Each community is or will be offering guidance for their area, and the CDC has updated recommendations about what people and community leaders should know and do.
Below are the latest answers to questions you have been asking us about COVID-19 and epilepsy. We will continue to update this page as new data reveals more information.
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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
- 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 different types of epilepsy, certain 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?
Some people with epilepsy regardless of seizure control 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.
- Some people may have other neurological or developmental issues that affect their immunity. People in these situations are at greater risk of developing more severe symptoms with viral illnesses.
- People with epilepsy may have other medical problems that could place them at higher risk of developing more severe symptoms with COVID-19.
- For example, people who have problems swallowing or frequently inhale food or liquids into their lungs (aspiration) are at higher risk for pneumonia.
- People with diabetes or underlying heart or lung problems also appear to be at higher risk for severe COVID-19.
Regardless of your situation, it is important for anyone with epilepsy to talk to their treating health care provider about their individual risks and if any specific medical precautions are needed. Take precautions to avoid getting sick too.
Does the use of seizure medicines increase the risk of coronavirus infection?
There is no evidence that using seizure medicines (also called antiepileptic drugs or antiseizure drugs or medicines) increases the risk of coronavirus infection, except for ACTH, steroids, everolimus, and immunotherapies. If you have any questions about the medicine you take, do not stop it – talk with your doctor about your concerns.
What should I do if I think I have COVID-19?
First call your health provider (doctor or nurse). The symptoms of COVID-19 are similar to the flu or common cold. Your provider will ask you a number of questions to see if you are likely to have COVID-19 or some other illness.
- The most common symptoms of COVID-19 are fever, cough, or difficulty breathing. If these symptoms are mild to moderate, your provider may recommend that you stay home.
- This means “quarantine” yourself – don’t go out in public or have others come into your home.
- Limit your exposure. Consider wearing a mask or scarf when you leave the house.
- Symptoms can often be treated at home. Ask your provider…
- Which over-the-counter medicines are safe to use with your seizures
- For specific instructions about when to call if symptoms change or don’t get better in a few days
- If you should be tested for the flu and COVID-19. If the symptoms are mild, they may not do tests right away.
- If symptoms don’t get better or you develop shortness of breath or pain, call your doctor.
- If you live with other people, try to keep away from them. Stay in one room, use your own bathroom, and don’t share food or utensils.
- If you help care for another person who is at risk for serious symptoms of COVID-19, stay away from them. Enlist help from other family, friends, home care agencies or volunteers who can safely care for this person.
- If seizures increase, call your epilepsy team or neurologist.
Are seizures a symptom of COVID-19?
Seizures are not a symptom of COVID-19. At the very end stages of serious forms of COVID-19, damage to other body organs can happen, including damage to the brain. This happens with other respiratory infections too. Under these circumstances, seizures could occur with COVID-19 in a person without epilepsy.
People with epilepsy could have more seizures if they are also sick with COVID-19 due to a number of factors.
Can seizures increase if a person gets COVID-19?
When a person with epilepsy gets sick with another illness, especially with a fever, they may see a change or increase in their seizures. The illness is a physical and emotional stressor to the body that could make seizures more likely. The same happens if someone is sick with COVID-19. However, early information from countries where outbreaks have occurred suggests that the risk of worsening seizures with COVID-19 seems low for most people with epilepsy.
You can reduce the chance of COVID-19 affecting your seizures by taking care of yourself. Try to avoid or prevent seizure triggers, for example:
- Try to eat and drink as normally as possible.
- If you are vomiting, make sure you call your health care provider to ask whether you need to re-take your medicine and what else you need to do.
- Try to get a good amount of sleep.
- Take over-the-counter medicine to keep a fever down. Initially some concern was raised that ibuprofen could make COVID-19 more severe. There is little data to support this. Acetaminophen (Tylenol) or ibuprofen could be used.
- Treat the symptoms of COVID-19. Most cold medicines are fine. Avoid cold medicines with pseudoephedrine if possible – this can affect seizures in some people. Talk to your health care provider about what is best to use.
- If you or a loved one develop COVID-19 and notice changes in seizures, contact your epilepsy health care provider for advice specific to your situation.
- Worry and anxiety about seizures and COVID-19 may affect people as well.
Video – COVID-19 and Epilepsy: How do you manage seizures during the crisis?
How can I manage my stress and worry?
This is a stressful time for everyone. People may be alone or caring for many people at once. Routines are changed or you may not have any routines as things change quickly. Listening to news may be making people more scared of getting sick.
While we can’t prevent all stress, everyone should look at how they are managing it. Chronic stress can lower one’s immunity. This may make you more prone to getting sick. Consider different ways to manage stress.
- Set daily routines – get up and go to bed at regular times.
- Set regular times to do other things – cleaning, taking walks or getting exercise in other ways.
- Eat at regular times and have sit down meals with family.
- Build relaxing activities into your routines – reading, listening to music, drawing or painting – whatever is enjoyable for you.
- If you have a yard, try gardening or outdoor work. Remember to keep distance from your neighbors. Getting fresh air is good for your physical and emotional health.
- Take breaks from news and avoid listening or watching at night if it’s making sleep hard.
- Practice mindfulness techniques – this may be meditation, deep breathing, quiet listening, tai chi, yoga or other activities.
- Connect with others – staying connected is probably the most important thing we can do right now. Call family or friends, text message or set up video calls. Do whatever works for you.
- If you normally see a counselor to help with stress, worry or depression, make sure you have a way to keep these connections. Ask if they will do phone or video calls.
- Keep up with healthy habits.
What if I have a change in my seizures, with or without another illness?
- Right now it’s better to avoid the hospital, an emergency room or urgent care clinic unless you really need it. Don’t go to an emergency room on your own unless it is an emergency. Many times you can be treated at home.
- Call your providers first. Don’t just go to their office without an appointment – this could put you or other people at risk for getting the virus.
- Many providers are offering “virtual visits” (called telehealth) by phone or computer. These can be just as useful as an in-person visit.
- If needed, your provider may recommend an adjustment in seizure medicine or recommend a rescue medicine to use during periods of increased seizures. If you already have been prescribed a rescue medicine, talk to your pharmacist about an emergency supply.
- However, just like any other time, if you or a loved one have an emergency, such as seizures lasting too long or more seizures than usual, seek emergency help.
Should I keep routine appointments for my epilepsy?
Many clinics and offices are cancelling or rescheduling routine appointments. This is being done to limit exposure to others who have acute illnesses like COVID-19 and to free up doctors and nurses to deal with urgent visits. Other clinics and practices may do visits with you by phone or by computer (called telehealth visits).
- Before your visit, call your provider’s office to check if the visit is still on and how it will be done.
Video – COVID-19 and Epilepsy: Should I keep my routine appointments?
When should I go to an emergency room for seizures?
COVID-19 is likely to result in busier emergency rooms. There will be many more patients than the doctors and nurses usually see so expect waits. Also, emergency rooms will have sick people and you can pick up illnesses there! Try to avoid emergency rooms and urgent care clinics as much as you can. This will reduce the risk of you or a loved one contracting COVID–19.
- If you think you need to be seen urgently, try to talk to your doctor’s office first if it’s safe to do so.
Despite planning, epilepsy is not predictable. The following are examples of when you may need to go to an emergency room:
- A seizure with loss of consciousness longer than 5 minutes that has not stopped and no rescue medicine is able to be taken at home.
- Seizures continue after a person has taken a rescue medicine.
- Remember – first give the rescue medicine enough time to work!
- How long the rescue medicine takes may vary by the drug taken or the form, whether rectal, nasal, or under the tongue or between the cheek and gum.
- Seizures happen in a different pattern than usual, are longer than usual, and are not responding to a rescue medicine.
- Seizure emergency that can’t be treated safely at home – for example a person has seriously injured themselves or is having trouble breathing.
- Seizure where someone has hit their head very hard.
Can COVID-19 increase the risk of sudden unexpected death in epilepsy or SUDEP in a person with epilepsy?
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.
How can I get more medicine if my health care provider prescribes it? Will it be covered by my insurance?
Some people have reported problems getting an extra or larger supply of their seizure medicine. The Centers for Medicare and Medicaid Services (CMS) has released information for people who have Medicare Part D prescription drug plans or Medicare Advantage plans.
- The plans now can be more flexible – for example remove prior authorization requirements, waive prescription refill limits, and relax home and mail delivery of prescription medicines.
- Providers are encouraged to expand access to telehealth services if possible.
These recommendations offer flexibility and options to health plans and do not require plans to make these changes.
Some private insurance companies and pharmacy benefit managers are adjusting coverage rules as well.
Learn about programs offered by some drug manufacturers that help people who cannot afford their medications.
If you are having trouble getting prescription medicines dispensed or covered by your insurance, please contact the insurance company first. In some situations, your pharmacist may be able to help do this for you.
What if I have other questions about insurance coverage related to COVID-19 testing or treatment?
- CMS has recently released information for health care providers about changes affecting coverage for medical care in different settings.
- Talk to your health care provider or insurance plan if you are have questions.
- A social worker or case manager may also be very helpful.
Are there shortages in seizure medicines in the United States?
There are no reported shortages of seizure medicines related to the COVID-19 pandemic in the U.S. that we know of now. The Food and Drug Administration (FDA) is monitoring this closely. However, before and unrelated to the COVID-19 pandemic, generic Levetiracetam Extended Release and Levetiracetam Immediate Release were both in shortage and continue to be.
If COVID-19 is in my community, what should I do?
Please follow the CDC guidelines about precautions that are important for everyone.
- You may need to stay home for a period of time. Follow your local public health recommendations.
- Avoid crowds and being too close to other people. This is called social distancing.
- Limit your exposure. Consider wearing a mask or scarf when you leave the house.
- Update your seizure action plan for what to do if there is a change in seizures and who to call.
- Talk to your healthcare provider about an extra supply of prescription medicines. If you can’t get the seizure medicine from your local pharmacy, look into a mail-order pharmacy. They often allow people to get a 2 or 3 month supply of medicine at once if prescribed by your provider. Review CDC’s prescription preparedness information.
- Keep supplies of any over-the-counter (OTC) medicines you normally take. Do NOT take any new OTC medicines without talking to your provider.
- Look into ways to have food and other things you need delivered to you.
- Stay in touch with family, friends or someone who can check on you if needed.
If I or my loved one is at risk for developing a serious form of COVID-19, should I take extra precautions?
- Follow the precautions described by CDC.
- Review the information above about what to do if seizures change.
- Talk to your health care team for specific recommendations.
- Look into options to stay at home if feasible.
- 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 or a loved one with epilepsy attends a work or day program in your community, talk to the agency about alternatives. Do they offer small group activities that meet local public health and government guidelines. Do they offer some form of home activity?
- If you or your loved one live in a group setting (group home, assisted living, or other long-term care facility), talk to the administrator and medical staff of the facility. Find out what precautions are being taken. If you have concerns about these, talk to your own health care team to see if any adjustments are needed.
- If you have help come into your home, follow common sense and make sure people helping you are 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.
- Have a back-up plan for help in the home too.
How do I protect myself from getting sick?
It is flu season and respiratory illnesses are common. Follow these common-sense tips from CDC to protect yourself from getting sick.
- Make sure you’ve had 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 health care provider first if you need an appointment.
- Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
Preparing for Any Emergency
Preparing for potential emergencies is part of life for all of us – whether that’s for natural disasters, extreme weather conditions, or medical emergencies. This is no different. Here are a few tips to follow now and every day.
- Remember – Talk to your pharmacist first about creating an emergency supply of prescription medicines.
- If you will need a new prescription in a few weeks, get it early so you don’t run out.
- If you have been prescribed a rescue medicine (for example, lorazepam (Ativan), clonazepam (Klonopin), rectal diazepam (Diastat), nasal midazolam (Nayzilam), or nasal diazepam (Valtoco)) to take if you have a change in seizures, talk to your pharmacist about an emergency supply of this medicine too.
- If you are having trouble with your supply of medicine, contact your pharmacy or call 211 for help. If they are unable to help, let your doctor know as they may need to substitute another medication for a short period.
- Remember – Keep your seizure action or response plan up-to-date. Keep this in one place along with a list of your medications, important documents, and, if possible, a supply of medication in a watertight bag or container.
- Keep a phone and any electronic devices charged that you may need for medication reminders and contact with family and emergency response.
- Keep a pen and paper calendar with you in case there is an extended period without electricity, so you can write down medication reminders or track any seizures.
- Remember – Check in with family or friends on a regular basis.
- Talk about any questions or worries – added stress can affect seizures and your emotional well-being.
We are Here for You
The 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.
The Epilepsy Foundation is advocating for policies that will ensure people with epilepsy can follow CDC guidelines on social distancing and have the health care and supports they need, including access to essential treatments, paid leave, unemployment benefits, housing and special education given increased virtual learning.
Learn more at advocacy.epilepsy.com/efa/covid-19.