By Amber Kaiser
There are many helpful resources for people with epilepsy available today about what to do during a seizure you witness, as well as seizure safety education, including free training courses and advice from Epilepsy Alliance America and Epilepsy Foundation. You can also find support in your local chapters and other epilepsy organizations started by families living with epilepsy in your area.
If you are reading this and you are an epilepsy caretaker, or if you have seizures, I’m sharing my first-person perspective with you to talk about the experience of what it feels like after you have a seizure and how to get help and create more seizure after-care and self-care in your life. As they say, hindsight is 20/20, and this is something I wish I had done more of in the past, although I’ve gotten much better at it the last few years out of necessity.
There are many different types of seizures, and based on the kinds of seizures you have and where the seizures start in your brain, you can experience different side effects, both short-term and long-term. I’ve experienced mostly nocturnal generalized seizures and complex partial seizure clusters at different times in my life. Like many people, especially those who later develop or have been diagnosed with epilepsy as an adult, I had a really hard time accepting having seizures and how they affected me and changed the course of my life.
I do know the fact that I had nocturnal generalized grand-mal seizures (while sleeping, not randomly losing consciousness in public; although I now know having these type of seizures uncontrolled are at the highest risk for SUDEP) and complex partial seizures where I maintained consciousness, helped me be able to live—on the outside—like most other people I knew at different times in my life. Because of that, as well as how I grew up with my personal drive and self-discipline, when I did have seizures, I didn’t know how to really care for myself and listen to my body and take breaks, or get help and support like I needed. I continued living a life filled with a lot of stress especially from my work even though I loved the level of responsibilities I had starting at such a young age. I was growing quickly and because of an opportunity I had very early in my career, I knew I could easily continue to succeed and advance whenever I decided to.
My body had other plans though. There are people who learn this early in life, whether it’s from a health condition, disability (like a lot of people, I used to dislike the term), or other traumatic life experiences that affect the reality of your everyday way of living. Because of my life and health experiences with epilepsy and later brain surgery, here are my top tips and advice for how independent adults (however you define it) can learn post-seizure care:
💜 If you work, and it’s possible for you, please take the day off from work and rest. Learn what it’s like to really chill. It is okay. Listen to your body—get more sleep, keep yourself hydrated with water and take it easy. Put your phone on silent for a while. If you can take the next day off work, or go in later, do so and don’t feel bad about it. If you have been able to talk with your work about your epilepsy, they may be more accommodating, hopefully. If you don’t feel comfortable talking with your work, do your best to let them know you aren’t feeling well. Seizures caused by stress can be common. Don’t stress your brain and body any more than it already has been with the seizures. If possible, you don’t want to trigger any more seizures than you’ve already had. If you have seizure clusters and have been advised by your doctor, it may also be a good time to take your rescue medication to help prevent more seizures. If this is the case, you must be able to rest and sleep.
💜 If you feel like it, practice some simple breathing exercises to help you relax. Remember to breathe in and out with your belly rising and falling, not your chest. There is also a free breathing app I learned about recently and it helps you time your inhale and exhale to get the most of each breath and activate both your sympathetic and parasympathetic nervous systems, helping to balance them with each other. It’s super simple to use as well. Just search “The Breathing App” in the App Store.
💜 Speaking from experience, even just doing it 10 minutes a day over time, meditation is a highly effective way to help calm your mind and tolerance level in reacting to everyday stresses. About 8 years ago, I started researching meditation and began practicing with a user-friendly resource that guides you called Headspace. You can actually now find a few guided meditations with them on Netflix. There haven’t been a lot of studies done on meditation and epilepsy, but there is some evidence that meditation can help calm the nervous system and improve epilepsy symptoms, although it remains an ongoing research question. It would be interesting to learn if it does help lessen seizure frequency or duration in some way with how mediation can naturally calm the nervous system.
💜 Even though you probably don’t feel like eating, still try to drink plenty of water and at least have a small healthy meal. Your brain and the rest of your body will thank you for it. It needs proper nutrition as well as sleep and rest to put energy into healing itself.
💜 Do you feel a lot of anxiety? Anxiety and seizures go hand-in-hand and it’s very normal to feel anxious after having a seizure. When you are up to it, talking about how you feel may even help ease your mind. Call a close friend or family member you feel safe talking with about your seizures. If you want to talk, but don’t have anyone you can open up to about your seizures, consider calling epilepsy resources like Epilepsy Foundation at 1-800-332-1000. They are confidential and available anytime, 24/7. I wish I had known about them in the beginning. Just talking with someone who understands seizures and listens can really help you feel less alone and help you understand what is happening in your brain. Also, being open to further support, advice and meeting others with epilepsy can save you from a lot of heartache and loneliness. There are so many community resources for epilepsy available today if you are ready to be open to them.
Everyone experiences epilepsy differently. Some even have epilepsy in families which is usually genetic. Do you happen to know your seizure triggers? If so, are you open to creating more self-care in your life to help reduce them if at all possible?
Stress and lack of sleep are common seizure triggers and my top suggestions are really sitting down and thinking about where you can realistically reduce stress in your life and likely get better sleep as well. Is it your job, a relationship, where you live, or any little things or routines you can change in your everyday life?
Reducing stress can make a huge difference in your health in many ways. I know AED drug side effects can include disrupting sleep and causing insomnia though. If that’s the case, is there anything else you can do to help with your sleep? There are natural remedies like CBD oil or ashwagandha that have been known to help with relaxation and sleep, but remember to always check with your doctor before starting a new supplement.
If you are in a position where you are trying different medications, or are in the beginning of trying a new medication, I highly recommend noticing if it affects your sleep early on, that way it’s easier for you to get off of it and try a different AED while dealing with the anti-seizure medication side effects before your brain gets used to taking it for too long. I know AED’s can be really tough experiencing a multitude of side effects while both getting on them and withdrawal side effects from getting off of them. Listen to your body and talk with your doctor about options. There have also been more studies done the last few years that show the benefits of CBD and cannabinoids for people with epilepsy. Although for epilepsy we often have to take high doses, CBD and THC have very little negative side effects and can actually help with sleep and relax the body by interacting with cannabinoid receptors in the central nervous system.
I hope some of these tips have helped you learn how to take good care of yourself while living with epilepsy. If you have any questions or suggestions for other resources to include, feel free to reach out to me at firstname.lastname@example.org. Sending you lots of good wishes and remember to stay connected with us on social media for the latest news and updates!