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 currently 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 conditions. 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, older people, and those with certain long-term conditions, such as diabetes, cancer, 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. 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 medicines increase the risk for COVID-19 infection, or for complications of COVID-19 infection?

No – there is no evidence that taking anti-seizure medicines increases the risk of infection, or of serious complications.

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

So far, information suggests that 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. Everyone in the house should stay at home for two weeks (14 days) to avoid spreading the virus to other people.

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 medicines if I’m 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 enables a longer prescription than normal. There is no evidence that there is currently a shortage of anti-seizure medicines.

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 you can. 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 it fail.

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 arrnagements. 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 drugs 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 definitive 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.

Is there a risk for people with epilepsy wearing masks?

There should be no contraindication for people with epilepsy to wearing a mask.

The US Centers for Disease Control and Prevention (CDC) recommends that ‘cloth face coverings should not be placed on young children younger than 2 years of age, anyone who has trouble breathing, or is unconscious, incapacitated or otherwise unable to remove the cover without assistance.

Should a convulsive seizure occur it is advised that someone removes the mask with caution to ensure optimal airway function.

Is emergency administration of buccal or nasal medication considered an at risk procedure?

Buccal or intranasal midazolam is given when a seizure lasts more than about 5 minutes, involving possible spray of the medication. Guidelines referring to nebulisers suggest these are not a risk as the aerosol generated by the device is derived from the medication fluid within the nebulizer chamber and not the patient (www.health.state.mn.us/diseases/coronavirus/hcp/aerosol.pdf) – the same would apply to intranasal or buccal midazolam.

If outside the home, to maximize safety, if possible, the person administering the medication should wear a mask, gloves and protective apron. Remember to wash hands following administration.

I have heard that people with respiratory problems associated with COVID-19 have been recommended to lie prone (on their stomach) to improve air entry to the lungs – what do we recommend for people with epilepsy who develop COVID-19?

Recent evidence has suggested improved breathing in people with COVID-19 respiratory disease who lie prone (on their front). However, sleeping in a prone position has been associated with sudden unexpected death in epilepsy (SUDEP).

People with both epilepsy and serious breathing difficulty due to COVID-19 are likely to be hospitalized, where medical professionals can provide guidance on sleeping position, as well as supervision. If they are at home and COVID-19 is making breathing difficult it is best to talk with a medical professional.

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.

You also can get more information here: Useful links for patients with epilepsy