Feature Article: Living with epilepsy and seizures during the COVID-19 pandemic
The last few months have been tough for most of humanity; this has been the result of the COVID-19 pandemic that has affected the entire world. People with epilepsy (PWE) have unique concerns, some of which will be addressed in this issue's feature article (and useful linked resources have been provided). Additional recommendations will be offered for everyone living through this pandemic.
Recommendations for staying mentally healthy during the pandemic:
1) Even though we have been urged to socially-isolate, avoid groups of people, refrain from going out unless very necessary, etc., we, as humans, are highly social creatures (even the ones who say they are not, are now realizing with the total lockdown that they are a tiny bit social). So, it is important to think out of the box and figure out creative ways to stay connected. Just some options include calling someone on the phone, emailing, checking into social media platforms, etc. Some groups of people are organizing group media options (e.g. watch parties, or virtual parties, and group chats through Zoom or gotomeeting.com). The important piece is to reach out if you feel the need or if there is someone you feel might need to hear from you.
Remember to "like" our Facebook page: https://www.facebook.com/Epilepsy-Life-Links-170564038705/ which is a good way to stay connected with our community and hear about news and events on a regular basis.
2) An excess of news exposure has now been identified as problematic for many. An overload of worrisome and unhappy information intruding into your day, all day long, is not healthy. So, if possible, it is recommended that you keep your exposure to the news down to a maximum of an hour a day. Preferably, pick a time of the day (maybe better in the early hours rather than close to your bedtime) and watch or read your usual (reliable) sources of news so you are informed but not overloaded.
3) The importance of a schedule cannot be overstated! Before all of this, most everybody had schedules and numerous activities that added structure to their days (e.g. get the kids off to school, go out to work, have lunch, take the kids to afterschool activities, take a Zumba class on Thursday evenings, go to the pharmacy, go out for dinner and relax on a weekend). But now, every day can seem like a whacky weekend. Granted, work is sort of going on for many online, kids are involved in remote learning, and we can maybe pick up some takeout at our local restaurant, but most of our lives are now taking place in our homes. So, it is recommended that you try to build a schedule for yourself that includes activities for the morning, afternoon and evening. Make sure to include self-care (e.g. take your medications, fit some physical exercise into your day, and sit down to eat real meals, not just snacks all day long, avoid relying on drugs and alcohol to manage your mood).
4) Perhaps, you may want to use some of the free time you now have to come out of this lockdown with a new skill or better off in some way or another. Maybe you would like to learn how to paint (there are lessons on-line), try an online pilates class, maybe start writing that short story or poetry, knit a scarf for the winter, sign up for language lessons. Set a goal for yourself and aim to have achieved it by the time social isolation is lifted.
5) Last but not least, be vigilant for psychological symptoms that may arise from this prolonged lockdown/social isolation. Some people will feel intense anxiety and depressed mood during this crisis and may need time and support even after the lockdown is lifted. Some may have lost family members, friends, their job, their home, etc. Especially in these circumstances, it is key that you are aware of the impact this might have on you or someone you know, now or in the future. Reach out or encourage someone to contact a medical doctor (many are offering telemedicine appointments) or a psychotherapist (many are offering teletherapy sessions). The National Suicide Prevention hotline is 1-800-273-8255 and if you are looking for therapy, call the SAMHSA Treatment Referral Helpline at 1-877-726-4727.
COVID-19 and epilepsy:
1) First off, an important fact to keep in mind is that there is no evidence that people with epilepsy are more vulnerable or at a greater risk from Covid-19 than anyone else. So, if the person does not have any underlying health conditions (e.g. obesity, cancer, etc.) or their epilepsy is not part of a syndrome that might affect their immune system, there should be no greater risk. Another thing, taking anti-seizure medications should not increase the risk of catching COVID-19 or of having a worse outcome if you do. However, the US Centers for Disease Control and Prevention (CDC) included epilepsy on a list of health conditions that might "increase the risk of serious COVID-19 infection. (check for more detailed information here: https://www.ilae.org/patient-care/covid-19-and-epilepsy/for-patients).
2) A major concern for people with epilepsy is to not run out of anti-seizure medications especially since many states are locked down and people are being encouraged to stay in and avoid public places. To avoid difficulties, it is essential that the PWE or caregiver communicate with their epileptologist/neurologist and obtain the appropriate prescriptions early on (don't wait until you have run out or are about to run out). Some insurances are now permitting doctors to prescribe several months of medication supplies and mail order prescription services may do the same.
3) As for visiting your doctors' offices, many medical practices switched over to telemedicine (appointments are offered through the computer or phone) rather than have patients come in person. Check with your doctor's office if that option is available.
4) As for going to the hospital, although it is recommended to keep away from hospitals and emergency rooms, partly because emergency departments are overwhelmed with high number of patients, and especially, because it is important to keep away from places with high concentrations of people wit COVID-19 symptoms, sometimes that simply is not possible.
Some general recommendations to consider when deciding whether to go or not to the hospital-- An emergency department visit may be necessary if:
* if the seizure lasts more than 5 minutes or occurs in clusters and there is no rescue medication available,
* if the seizure may have caused injury (happened in a bath or swimming pool),
* if the seizure is markedly different or prolonged in time it takes to recover.
Important resources for more information:
https://www.ilae.org/patient-care/covid-19-and-epilepsy/for-patients
https://www.aesnet.org/about_aes/position_statements/covid-19
