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OUR MISSION

"The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives."

 

CONCERNS ABOUT COVID-19 AND EPILEPSY

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.

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

1. Does not increase the risk of getting COVID-19

AND

2. 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.

  A. For example, people who have problems swallowing or frequently inhale food or liquids into their lungs (aspiration) are at higher risk for pneumonia.

  B. 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.

--People with seizures and epilepsy should make sure they take their medicine regularly and as prescribed at all times.

--Make a plan with your health care team about what to do if you miss any doses.

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.

--Symptoms can often be treated at home. Ask your provider...

  A. Which over-the-counter medicines are safe to use with your seizures

  B. For specific instructions about when to call if symptoms change or don’t get better in a few days

  C. 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 COVID19, 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:

Be extra careful taking your seizure medicine – don’t miss any doses. You may be out of your usual routines so do whatever will help you take them at regular times.

--Set reminders on your phone.

--Use sticky notes.

--Have someone remind you when to take medicines or ask if you’ve taken them.

--Use a checklist to make sure you took them.

--Use a pillbox.

--Use an app like Texting 4 Control or a seizure diary.

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.

What if I have a change in my seizures, with or without another illness?

A. 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.

B. 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.

C. Many providers are offering “virtual visits” (called telehealth) by phone or computer. These can be just as useful as an in-person visit.

D. 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.

E. 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.

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.

  A. Remember – first give the rescue medicine enough time to work!

  B. 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.

Important

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 in the U.S. that we know of now. The Food and Drug Administration (FDA) is monitoring this closely.

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.

--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?

A. Follow the precautions described by CDC.

B. Review the information above about what to do if seizures change.

C. Talk to your health care team for specific recommendations.

D. Look into options to stay at home if feasible.

E. 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.

F. 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?

G. 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.

H. 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.

I. 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.

A. Make sure you’ve had a flu vaccine.

B. Wash your hands regularly to prevent the spread of germs.

C. Avoid close contact with people who are sick.

D. Avoid touching your eyes, nose and mouth.

E. Stay home if you are sick and call your health care provider first if you need an appointment.

F. Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

G. 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.

We are Here for You

The Epilepsy Foundation of Greater Southern Illinois is here to help before and after an emergency. Community Resource Facilitators are working daily. Although, face to face services have been temporarily suspended, please call (618) 236-2181 for up-to-date information or to discuss your needs.

Epilepsy Foundation Seeks Support for People with Epilepsy in COVID-19 Relief Packages

Congress is working on an economic stimulus package — the Families First Coronavirus Response Act (H.R. 6201) — given the COVID-19 pandemic. The Epilepsy Foundation has been advocating in coordination with the patient and disability communities for provisions to be included that help ensure access to health care and medications and other critical support like meaningful paid leave during these challenging times.

On March 14, the Foundation joined the Consortium for Citizens with Disabilities in a letter that was sent to Senate leadership outlining critical support needed for people with disabilities and the programs they rely on. On March 16, 29 national patient and consumer organizations, including the Foundation, released a statement urging the U.S. Senate to immediately pass H.R. 6201 and sent an accompanying letter to Senate leadership.

More Resources

• American Red Cross, 1-800-RED-CROSS

• RxOpen.org helps people find nearby pharmacies that are open in areas impacted by disasters or emergencies. While this service does not provide medication, it can help you find a pharmacy that is open, so you can have your prescription transferred there to be filled.

• U.S. Centers for Disease Control and Prevention (CDC)

  o CDC also offers resources for Emergency Health Professionals.

• U.S. Equal Employment Opportunity Commission (EEOC) guidance on pandemics in the workplace

Authored by Patty Obsorne Shafer RN,MN / Judy Gretsch on 03/2020

Reviewed by Elaine Wirrell, MD / Jacqueline French MD on 03/2020