Coronavirus Information for People Affected by Epilepsy in New England
Is the COVID-19 Vaccine Safe for Those Living with Epilepsy?
According to John Hopkins Medicine1 based on information currently available, the COVID-19 vaccine is safe for people living with epilepsy. Although the data is limited, so far there is no evidence that patients with epilepsy are at a higher risk of adverse complications after getting the COVID-19 vaccine. As with any vaccine, some people may develop a fever which could lower their seizure threshold for the short term, and rarely, could result in a break-through seizure. There is no evidence that any of the COVID-19 vaccinations results in worsening of seizures or epilepsy or in brain injury. Please contact your doctor should you have questions regarding the COVID-19 vaccine and the effects associated with epilepsy and/or individual factors.
Should Those with Seizures Triggered by Fever Avoid Getting the COVID-19 Vaccine?
Elevated temperature (fever) is a common side effect after getting a vaccine. Fevers have been reported as a side effect after getting the COVID-19 vaccine. While some people with epilepsy have seizures that are triggered by fever, the available data about the risks of COVID-19 and the safety of the COVID-19 vaccines support vaccination for people living with epilepsy.
Special thanks to Barbara Dworetzky, M.D., Brigham and Women’s Hospital, for sharing a literature review that informed this message.
Any additional questions regarding COVID:
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Q: Are people with epilepsy at increased risk for getting COVID-19?
A: There are many different types of epilepsy and the impact of epilepsy on each person will vary. Comorbid illness in people living with epilepsy and medical issues related to therapy for controlling seizures will also vary. Currently there is no evidence to suggest that a person with a diagnosis of epilepsy alone is at higher risk for getting COVID-19.
We urge you to take as many precautions as possible to protect yourself from exposure to COVID-19.
Q: Are people living with epilepsy at increased risk for complications from COVID-19?
A: If any person, including a person with epilepsy, has a compromised immune system or other ongoing chronic medical challenges (for example, diabetes, heart disease, lung disease, kidney disease, swallowing difficulty with recurrent aspiration pneumonia, blood disorders) they may have higher risk for complications from COVID-19. In the most recent update from the CDC, they have included epilepsy, as well as many other medical and neurologic diseases, as a condition which may increase the risk of serious COVID-19 for individuals of any age.
As we continue to learn more about COVID-19 and its impact, we encourage you to ask your doctor if your current treatments for epilepsy or other comorbid medical conditions impact your personal level of risk.
Q: Can a virus like COVID-19 cause someone to have seizures?
A: Viral illness is often accompanied by fever as well as symptoms like fatigue, body aches, headaches, gastrointestinal symptoms and others, and this will depend on the type of virus. Fever is a symptom which has been described with COVID-19. Fever can lead to a decreased seizure threshold and may trigger an increase in seizures. It is important to make sure you have a plan in place for managing breakthrough seizures. If you do not have a seizure action plan in place speak with your epilepsy doctor.
Q: How can people protect themselves from getting Coronavirus?
A: We are still learning about COVID-19 and how it spreads. The best way to protect yourself is to avoid being exposed to the virus. There are a number of ways you can protect yourself and the people around you. These include:
Practice good personal health habits.
• Wash your hands often and for at least 20 seconds. Be sure to wash your hands if you have been sneezing, coughing or in a public place.
• Demonstrate thorough hand washing to children
• Leave reminders like a post-it-note on a bathroom mirror to help encourage hand washing for children and people who may have trouble remembering
• Avoid touching your mouth, nose, or eyes
• Use a hand sanitizer that contains at least 60% alcohol if soap and water not available
• Cover your mouth and nose with a tissue if you cough or sneeze; or cough into the inside of your elbow. Remember to throw tissue in the trash and wash your hands.
CDC resource: HANDWASHING: www.cdc.gov/handwashing/pdf/hand-sanitizer-factsheet.pdf
Practice social distancing.
• Try to limit your exposure to other people.
• Keep your distance, if you need to be out in a public space aim for 6 or more feet away from others.
• Avoid crowded spaces like public transport and large gatherings of people.
• Limit time outside of your living space. If possible, telework and teleschool from home.
• Look into grocery delivery services.
• Eliminate non-essential work or personal travel (planes, trains, buses).
• Eliminate contact with surfaces that are not regularly cleaned, such as public playground structures.
• Consider other people that share your living quarters (e.g., partners, children, parents, etc) and their possible exposures to the virus – through their movement outside your living space. Think about ways you can limit your exposure to any germs they may carry back to your living space. Tips for your home include:
o Leave shoes by the door
o Wash hands on arrival home for at least 20 seconds
o Clean and disinfect surfaces regularly
o Don’t share personal household items
NEW CDC RECOMMENDATION: CLOTH FACE COVERINGS
Recently published scientific data have shown that many people with COVID-19 do not have any outward symptoms of the virus, and that even people who eventually will have symptoms of the virus can transmit the virus to others before any symptoms appear.
The CDC has recommended that people wear cloth face coverings in public settings where it is difficult to practice social distancing (grocery store, pharmacy). Wearing a cloth face covering will protect people around you if you are sick but do not have any symptoms. This will help to slow the spread of the virus. Cloth face coverings are NOT a substitute for social distancing. You should continue to practice social distancing even when wearing a cloth face covering.
The recommendation from the CDC makes clear that people should avoid using the kind of protective masks (N95 respirators or surgical masks) that are in very high demand and short supply for health care workers. The CDC resource below provides instructions for how to make and clean a cloth face covering.
*The CDC recommends cloth masks should not be placed on children under age 2, or on anyone who has trouble breathing or is unconscious, incapacitated or otherwise unable to remove the mask without assistance.
CDC RESOURCE ON CLOTH FACE MASKS: www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/diy-cloth-face-coverings.html
CDC RESOURCE ON HOW COVID-19 SPREADS: www.cdc.gov/coronavirus/2019-ncov/faq.html
Practice good general healthy living strategies to help keep your immune system and your body strong. Remember to make time to care for your mental health. Physical and emotional wellness tips include:
• Keep a Healthy Diet: Regular, balanced meals are an important part of staying healthy. Remember to stay well hydrated.
• Prioritize Sleep: Sleep is important for people of all ages. Make an effort to get enough good quality sleep. Aim for at least 8 hours of quality sleep.
• Exercise: Moving your body is an important part of staying healthy physically and emotionally. Taking a walk around the neighborhood or working out at home are good ways to keep moving and boost your energy.
• Reduce Stress: It is a time of overwhelming news and we can all get trapped in being glued to our screens. Make a habit of being informed by scheduling times to check in on reputable news outlets and limiting social media “watching.” More information on stress and anxiety is located here.
• Don’t smoke.
• Limit alcohol use if you are able to drink alcohol (some people with epilepsy are restricted from any alcohol use).
• Stay Connected During a time of isolation, consider ways you can connect with family and friends using phone, email, or video chats. Epilepsy Foundation New England has converted all of our SHARE groups and educational programs to online offerings. You can see the list here.
Read more information from the CDC here.
Q: I have epilepsy, should I keep my regular medical appointments?
A: Contact your health care team for advice about epilepsy appointments and other appointments you may have for your general health or testing (for example: PCP, psychiatrist, psychologist, pediatrician, EEG testing, blood work).
Most provider offices are implementing strategies for phone- or web-based appointments and many hospitals are working on increasing the availability of “Telehealth” appointments. Your first step is to contact your provider’s office and discuss the best options for you or your loved one.
Q: What should I do if I think I have COVID-19?
A: If you have been exposed to COVID-19 or develop symptoms that may include a fever, cough or trouble breathing, call your primary care doctor to discuss testing and symptom treatment options. Seek medical attention immediately for emergency symptoms that are severe or concerning. If you test positive, let your epilepsy/neurology team and any other medical care providers know immediately via phone or email.
Q: What should I do if I have coronavirus?
A: Call your primary care doctor and your epilepsy doctor to let them know. They will provide you with advice based on the severity of your symptoms. They may recommend for a person to stay home to recover using supportive care like getting as much rest as possible, drinking plenty of fluids, monitoring your temperature for fever and using medicine to keep your body temperature as normal as possible. If you are having trouble taking anti-seizure medicine, or have gastrointestinal symptoms that include nausea, vomiting, diarrhea contact your doctor immediately for next steps.
*Report any change or worsening of symptoms, including a change in seizures, immediately to your doctor and follow instructions for further evaluation and treatment that may be necessary. Use seizure first aid guidelines and seek emergency help when required for prolonged or repeated seizures.
You can read more information at the CDC website here and www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/caring-for-sick-person.html
Q: Lots of things are closing, what about medicine and supplies I need for my health?
A: Talk to your doctor about obtaining a 90-day supply of all your medications. Make sure to include your “rescue” medication (medication used to stop a seizure that is given in addition to daily preventative anti seizure medicine). If your insurance company says “no,” push back on insurance companies, enlist the help of your pharmacist, and let your doctor know if you are having trouble accessing medicine. Many insurance companies are changing their policies to allow access to 90-day supplies of medications. For example, Mass Health has changed its policy.
If going to the pharmacy is not possible, contact your pharmacy in advance to see if they are able to deliver medication if needed. There may be other pharmacies in your area that DO deliver, and you might consider switching your pharmacy so that you can have a delivery option. We suggest you also have a thermometer, ibuprofen, and Tylenol in your home medicine cabinet.
Q: What do I need if I am on the ketogenic diet or using other dietary therapy?
A: If you are treated by the Ketogenic Diet, Modified Atkins Diet, Low Glycemic Index Treatment Diet and contract COVID-19 follow the guidelines your dietitian has prescribed for you during times of illness. Fever medicine in a pill or sugar free liquid form should be able to be used although the sugar free liquids may contain artificial sweeteners and sugar alcohols such as sorbitol, maltitol etc. and individual tolerance may vary. Ingredients and carbohydrates can be found online by looking up the individual manufacturer.
If you are shopping for shelf friendly items some diet friendly foods are: broth, canned tuna in oil, mayonnaise, shelf stable heavy whipping cream or powdered heavy whipping cream, macadamia nuts, sugar-free jello (and gelatin for gummies!), coconut/olive/avocado oil, ghee, coconut or nut milk, nut-based or coconut flour,diet-friendly sweetener, whips, flackers, nut butter, seaweed snacks, diet friendly bars your child tolerates such as good-fat bars, Keto-cups. Some children tolerate Birch Benders keto-pancake mix or the variety of keto&co baking mixes available online. Additionally, most proteins and cheeses can be frozen. Eggs, cheese, cream cheese, butter, shirataki noodles are among foods that have a long refrigerator life.
The Charlie Foundation published an article on low carbohydrate foods and immunity which can be found here.
Q: How can I share information with my child about COVID-19?
A: There are still many unknowns about COVID-19 and this uncertainty can bring worry for families. Some tips for talking to children include:
• Communicate your family plan (handwashing, healthy habits, routines) in a calm and reassuring way. Keep explanations age-appropriate.
• Share that adults at home and school are taking care of their health and safety.
• Make yourself available for questions and do your best to address fears and concerns.
• Keep an eye on television and social media viewing.
• Keep a sense of normalcy in your home. Stick to routines around mealtimes, bedtimes, playtimes when possible. Create consistent learning routines and learning spaces if school learning has shifted to a home setting.
• Model and encourage healthy behaviors (sleep, exercise, healthy eating).
*If you are a caregiver of a child, partner or older adult with epilepsy be sure to have a back-up plan for caregiving in place in the case of you becoming sick or needing to be isolated because of exposure to COVID-19.*
Q: COVID-19 has led to the company I work for closing. I am currently not working. I am worried I will not be able to afford my medicine or my rent. Where can I find help?
A: The economic stress from the pandemic is being felt by many. To find help and connect with resources call our EFNE Resource and Support Center 617-506-6044.
ADDITIONAL RESOURCES: www.epilepsy.com/living-epilepsy/247-helpline/patient-assistance
WHO: Helping Children cope with stress during the 2019-nCOv outbreak
CDC: Talking with children about Coronavirus disease 2019
CDC: Mental Health and Coping During Covid-19
Brains On podcast for kids. “Understanding Coronavirus and how germs spread.”
On Our Sleeves: Talking with children about Coronavirus
More questions? Looking to connect? Send an email to Susan Linn firstname.lastname@example.org and we will help you. Thank you from all of us at Epilepsy Foundation New England.