COVID-19 FAQS for People with Epilepsy and Carers

Do people with epilepsy have a higher risk of COVID-19 infection?        

In general, there is no evidence of increased risk of infection in people with epilepsy, compared with the general population.

People who are seizure-free on medications, or who have occasional seizures and no other health issues, are not at increased risk.

For some people, epilepsy is part of a syndrome, or epilepsy in association with other diseases. These people may have other health issues in addition to their epilepsy. If these health issues affect the immune system, their risk of infection can be raised. Risk is increased in people with weakened immune systems (e.g. older people, people with cancer, patients receiving immune-suppressive medications), and those with certain long-term conditions, such as diabetes, high blood pressure, heart disease and chronic lung disease.

People with uncontrolled seizures, particularly seizures triggered by fever or infection, may be more vulnerable to increased seizures at the time of infection but there is no evidence of this as yet. The most important thing is to make sure that those with epilepsy continue to take their regular medications and avoid any other seizure triggers (e.g. alcohol, sleep deprivation).

Are people with epilepsy at increased risk for complications from COVID-19?

Anyone with a compromised immune system or ongoing medical challenges may have a higher risk of complications, when affected by COVID-19. The US Centers for Disease Control and Prevention (CDC) has included epilepsy on a list of conditions that may increase the risk of serious COVID-19 infection, likely because it is a chronic neurological condition. The UK has included people with chronic neurological conditions (without specifying epilepsy) as an “at risk” group.

Do any anti-seizure medications increase the risk for COVID-19 infection, or for complications of COVID-19 infection?       

No – there is no evidence that taking anti-seizure medications increases the risk of infection, or of serious complications. However, there are drug interactions that need to be considered in the case of COVID19 infection and its treatment.

Patients, who receive immunosuppressive drugs, for the treatment of the underlying cause of the seizures or for comorbid illness (e.g. rheumatoid arthritis, psoriasis, etc) are at higher risk, depending on the type and dose of immune suppressive treatments.

Can seizures get worse or more frequent if someone with epilepsy is infected with COVID-19?   

So far, there is a low risk of seizures getting worse for most people with epilepsy if they become infected. In general, though, getting sick—and particularly having a fever—can make seizures more frequent. Illness stresses the body, and stress can also increase seizure risk.

What if I think I have COVID-19?            

Call your doctor’s office or your country’s coronavirus service line if you think you may have COVID-19.

The most common symptoms of COVID-19 are fever and a dry cough. Most people have mild symptoms and can recover at home. If you live with other people, stay away from them as much as possible. Follow local guidance with regards to isolation.

If you have any of these symptoms, seek medical attention right away:

  • Difficulty breathing
  • Persistent pain or pressure in your chest
  • Bluish lips or face

How can I get more anti-seizure medications if I am running out?   

You should be able to obtain a repeat prescription in your normal way – whether through your local physician or hospital. It may be that your doctor gives you a longer prescription than normal.

Should I go to the emergency department if I have a seizure or a seizure cluster?

Emergency departments may be busy due to COVID-19 and may have people waiting who have symptoms of COVID-19. Many emergency departments will separate those with COVID19 symptoms from those who do not. However, the advice is to try and avoid the emergency department if it is not necessary for you to go there. If your situation is not a life-threatening emergency but you think you should see a doctor, call your doctor’s office first.

It is worth making sure you are clear about when and where you should visit an emergency room with your medical team. Some patients have emergency rescue medication at home and should be clear about when it should be used, and when to go to the emergency room should the rescue medication not work.

Most tonic-clonic seizures (seizures with convulsive activity) last under 2-3 minutes, and do not require emergency medical services or hospital care.

Medical/hospital care may be required

  • if tonic-clonic seizures last more than 5 minutes or occur in clusters with no rescue medication available,
  • if seizures occur in water (baths, swimming)
  • if seizures are followed by unusually prolonged postictal symptoms (e.g. confusion after a seizure) or abnormal recovery
  • if seizures cause potentially dangerous injury

I am in a clinical trial and taking an experimental drug. What should I do?

You should continue to receive your medication, although visit schedules may be conducted by telephone or video-visits, and blood evaluation if required conducted more locally. The hospital responsible for your monitoring should communicate arrangements. Further it is likely they will arrange for study medications to be couriered when repeat prescription is required. If you are hospitalized for any reason, make sure your admitting hospital knows that you are taking the experimental drug.

I have read some warnings that some fever-reducing medications are not safe to take if I’m infected with COVID-19. Is this true?    

Ibuprofen, naproxen sodium and other non-steroidal anti-inflammatory drugs (NSAIDs) can relieve pain and fever; they also reduce inflammation. Another drug, paracetamol (also known as acetaminophen), controls pain and fever but does not affect inflammation. Although there have been concerns circulating about a risk of more severe infection with nonsteroidal anti-inflammatory drugs there is no evidence to support this.

If you have a fever or body aches, you can take one of these drugs for relief, as long as you follow the dose instructions.

I have been given access to a COVID-19 vaccine. Is it OK for me to receive this vaccine?      

Yes, you should receive a COVID-19 vaccine if offered, including a booster dose if applicable. This recommendation is also valid in case you have frequent seizures, or you have associated disabilities.  For people with epilepsy, the risk of COVID-19 infection and potential complications far outweigh the risk of any possible side effect from a COVID-19 vaccine. For more information about vaccines and epilepsy, and the few contraindications to receiving a vaccine, click here.

I had an increase in my seizures after receiving the first dose of the COVID-19 vaccine. Should I skip the second dose?   

There is no evidence that the COVID-19 vaccine increases the risk for seizures. Although fever (which sometimes occurs after vaccination) can precipitate seizures, an increase in seizures after receiving the vaccine may just be due to chance. Receiving a second dose of the vaccine is very important to ensure that you are adequately protected against a severe form of COVID-19. In general, worsening of seizures after a first dose of the vaccine is not a contraindication to a second dose, but you should discuss it with your doctor who is in the best position to provide advice.

What if I have other questions that weren’t covered here?        

Call your doctor’s office. Many clinics and regular appointments have been changed to telephone or video consultations rather than cancelled, but your doctor or one of their colleagues are still available and should be able to answer your questions over the phone.

In addition, your local epilepsy patient organisation may also have resources available that are relevant to your country. Please reference the list of chapters for the International Bureau for Epilepsy.

You also can get more information at the links below:

Last updated: 2 December 2021