Managing Epilepsy During COVID-19 Crisis
Based on an article originally published February 28, 2020, and updated several times.
Video - COVID-19 And Epilepsy: How Do You Manage Seizures During The Crisis?
How Can I Stay On Top Of Managing My Seizures?
Follow basic seizure first aid and make sure others around you know how to help when a seizure happens.
- Know the 3 steps to seizure first aid – Stay. Safe. Side.
- Most seizures are not emergencies and can be managed at home with seizure first aid.
- Be extra careful taking your seizure medicine – don’t miss any doses.
- You may be out of your usual routines. Set up a reminder system that will work for you. Some ideas to consider:
Keep An Adequate Supply Of Seizure Medicine Available.
The Centers for Medicare and Medicaid Services (CMS) has relaxed rules for people who have Medicare Part D prescription drug plans or Medicare Advantage plans. Some private insurance companies and pharmacy benefit managers are changing their rules too. Some plans may be more flexible – for example, remove prior authorization requirements, waive prescription refill limits, and relax home and mail delivery of prescription medicines.
- Contact your pharmacy first to see if you can get at least 1-month supply of medicines – make sure this includes seizure medicines taken on a daily basis or used as a rescue medicine.
- Some pharmacies, especially mail-order pharmacies will allow up to 90-day supply of medicine.
- Call the Epilepsy Foundation’s 24/7 Helpline if you are having trouble getting your medicines or need financial help. English: 1-800-332-1000 and en Español: 1-866-748-8008
- If you are told the supply of your medicine is short, contact your pharmacy. If they are unable to help, let your doctor know as they may need to substitute another medication for a short period.
Make Sure You Have A Seizure Action Plan And Keep It Updated.
- Ask your epilepsy team if you should have a rescue medicine to use in case of a change in seizures. Rescue medicines do not take the place of daily seizure medicines. They can be used to help prevent a seizure emergency and prevent the need to go to an emergency room.
- Make sure family, friends and your health care team have a copy of you seizure action plan.
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.
Video - COVID-19 And Epilepsy: How Can I Reduce Stress For Me And My Family?
Video - COVID-19 And Epilepsy: How Do I Cope With Uncertainty Of These Times?
Article: April 6, 2020
“Sharing Information about COVID-19 with Children and Teens”
IBE Article" May 14, 2020
The International Bureau for Epilepsy (IBE) invited Professor Gus A Baker and Professor Steven Kemp to write about the psychological impact of COVID-19. The authors outline some of the challenges people are facing during community lock downs and provide ideas to help with managing those challenges.
How Do I Stay In Touch With My Health Care Team?
Many clinics and offices have been rescheduling routine appointments or doing visits by phone or video visits. These changes are intended to limit your exposure to others who have acute illnesses like COVID-19 and to free up doctors and nurses to deal with urgent visits. Clinics and practices may continue phone or video visits (called telehealth visits) for a while.
- Before your visit, call your provider’s office to check if the visit is still on and how it will be done.
- Continue to track your seizures and how you are doing at home - share this information at all visits, in person or by telehealth.
- Ask what number to call if you need to talk to your epilepsy team. Some hospitals are using nurse triage lines to help answer questions too.
Download A Telemedicine Visit Checklist
Created by the Epilepsy Learning Healthcare System, this checklist will help you prepare for a telemedicine (or telehealth) visit with your health care provider. Find steps to take 1-2 days before, 1-2 hours before, and during your virtual appointment.
Video - COVID-19 And Epilepsy: Should I Keep My Routine Appointments?
Video - COVID-19 And Epilepsy: How Can Seizures Be Evaluated Using Telehealth?
As Hospitals And Clinics Open ...
Depending on where you live, you may soon start seeing your health care providers in the clinic or hospital setting. Admissions for testing and surgery are also beginning to be rescheduled.
- Make sure to ask about any special procedures to take before going to an appointment.
- If you are scheduled to be admitted to the hospital, ask to talk to the epilepsy nurse and doctor about what to expect, what precautions will be taken, and how you should prepare.
- If you or a family member are at risk for a severe form of COVID-19 because of your age or other health problems, ask to continue telehealth visits.
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.
"24 Hours In The COVID-19 Ward With Marie"
In a blog on Ring14 USA's website, Yssa DeWoody writes about her family’s recent stay in a COVID-19 hospital ward when her daughter Marie was fighting different infections. Reflecting on her experience, Yssa created a new acronym for actions families with medically fragile children should take during the pandemic: Prepare Protect Expectations (PPE). She calls it “a spin-off of the all too scarce Personal Protective Equipment.”
Marie has a rare chromosomal disorder called Ring 14 syndrome. The disorder and it’s underlying conditions like a compromised pulmonary system, intractable epilepsy, and intellectual disabilities, put her at high risk for a severe case of COVID-19.
My Child Is Being Evaluated For Epilepsy Surgery. Will It Be Canceled?
During the height of the COVID-19 pandemic, nearly all elective procedures were on hold for several reasons. One reason was to save resources for people with COVID-19. Elective visits and procedures were also cancelled to lessen the spread of COVID-19.
Hospitals and clinics are beginning to 'open up' again. Tests and surgeries will gradually be scheduled in the coming weeks or months, depending on where you live.
- Each hospital and each epilepsy center is working out details to get visits, tests and surgeries rescheduled. This will be a complex process and may take a while.
- If you have had tests or surgery postponed over the past few months, talk to your provider about rescheduling at your next visit or phone call.
- If your surgery or test continues to be delayed, it's not because you or your child are any less important than someone else. Your surgery is still important! Please give your health care team time to get things scheduled in a way that each person will get the care they need in a safe manner.
Video - During COVID-19: My Child Is Undergoing Evaluation For Epilepsy Surgery. Will Surgery Be Cancelled?
Video - COVID-19 And Epilepsy: If Surgery Is Cancelled, What Should We Do?
Video - COVID-19 And Epilepsy: Is There Ever A Time When Surgery Is More Urgent, And How Is That Handled?
We Have More Answers
- What is the coronavirus and COVID-19?
- Are people with epilepsy at higher risk of developing COVID-19 (coronavirus)?
- What factors may increase the risk from COVID-19 for a person with epilepsy?
- Do children get COVID-19 as often as adults?
- What is autoimmune epilepsy and does it increase my risk for severe COVID-19?
- What can people do to limit exposure to the coronavirus?
- What should I do if I think I have COVID-19?
- Are seizures a symptom of COVID-19?
- Can seizures increase if a person gets COVID-19?
- My seizures are worse. What should I do?
- How do I protect myself from getting sick?
- If COVID-19 is in my community, what should I do?
- When should I wear a mask and what kind is best?
- Are there certain activities or places I should avoid if I have epilepsy?
- Can COVID-19 increase the risk of sudden unexpected death in epilepsy or SUDEP in a person with epilepsy?
- Can people with epilepsy donate blood?
- What testing is available to tell if I have COVID-19?
- What is an antibody test and when should a person get this done?
- Does the use of seizure medicines increase the risk of coronavirus infection?
- Do any of the medicines being tried to treat COVID-19 interact with seizure medicines?
- How can I get more medicine if my health care provider prescribes it? Will it be covered by my insurance?
- What if I have other questions about insurance coverage related to COVID-19 testing or treatment?
- Are there shortages in seizure medicines in the United States?
- We are Here for You
- Watch Our Facebook Live Series
- Explore Our COVID-19 and Epilepsy Videos on YouTube
- Related Articles
- Preparing for Any Emergency
- More Resources
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