By Amber Kaiser

Sending you Happy New Year wishes in 2024! When I was thinking of an article topic for this first week of the new year, I thought the idea of sharing a message of support and advice on learning how to better accept epilepsy and seizures in your life—which I know can be indescribably difficult—may help people who have been really wanting to feel some sort of peace and hopefulness living with epilepsy. Speaking from experience living with epilepsy, it took me almost 20 years to finally accept having seizures, and although, gratefully my seizures are infrequent now due to brain surgery, every time I have another seizure it makes me feel like I’m starting all over again. I’m sure many people can relate. I’ve had to remind myself that having a seizure is no longer a set-back; it just is what it is and I know I’m doing the best I can to take care of my brain and body. Does this resonate with you? If so, here are some tips and words of encouragement to help give you understanding, support and hope in this new year.

Learning how to accept an epilepsy diagnosis

As anyone with epilepsy or a caregiver of someone with epilepsy understands, the diagnosis of epilepsy is so much more than just having seizures. Seizures—a burst of uncontrolled electrical activity between brain cells or neurons—cause many side effects every time they happen and affect the way your brain processes, both in the short-term and the long-term, especially if they aren’t under control with AEDs or other seizure disorder solutions, the latest being less invasive brain surgery options. Medications, brain surgery and other seizure control trials also have side-effects that often last the rest of your life. So, epilepsy is very hard to accept for most people, especially the person with epilepsy because not only do they experience all the side-effects, but they also see how the disease affects everyone around them. Tragically, suicide and thoughts of suicide can also be more common in people with epilepsy, especially when they don’t have a loving support system. 

I know the concept sounds simple, yet reminding yourself that you are enough as you are and accepting that you cannot change your brain in the moment, may be a beginning to the long journey of accepting your seizures and epilepsy even if you are still trying to find solutions. It may help to remind yourself daily of this classic quote by Reinhold Niebuhr:

Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

I suggest posting this message somewhere you can see it every day like your bathroom mirror or your fridge. If you prefer your phone, you could even make a note to yourself in your calendar and have it pop up to remind yourself every morning. And, remember, you are much more than your body, you are a spirit that lives in your body and you are doing the best you can.

Connecting with the epilepsy community

When you accept your personal challenges, it can help you open up and connect with others who understand you, which can really help you learn to live with your challenge, whatever it is. I spent many years attempting to ignore my seizures and live my life like everyone else I knew, which prevented me from opening up, making changes in my everyday life that I needed to reduce stress and getting more educated on epilepsy in general. I know it is more difficult than most people can imagine, but accepting your seizures and epilepsy will help you open up to finding epilepsy support groups and help and even meeting other people with epilepsy who can understand you. Taking these steps can make all the difference in your life and give you a feeling of love and hope every day. If you feel like talking with someone right now, I also suggest connecting with the Epilepsy Foundation at 1-800-332-1000. They have a free 24/7 epilepsy help line where you can ask questions and feel safe being open to someone about your experiences living with epilepsy. Asking your neurologist or epileptologist for a referral to epilepsy counseling could also be very helpful.

Staying educated about epilepsy

Once you start accepting epilepsy, I believe it makes it much easier to stay educated on the latest studies, medications, research and brain surgery for seizures options in the field. Keeping yourself informed can also help you have more in-depth conversations with your neurologist or epileptologist. It also helps you feel like you have a little more control in your life—you don’t always have to do everything the doctor recommends—be aware of all your options, even the latest in epilepsy medications. For example, I first heard about the AED XCOPRI when starting to work with Neureka and have heard that it has worked for many people. I wish I had known about it when I got back on an AED a few years ago because I definitely would have asked about it. At the time, I was sure I didn’t want to get back on any medication I was on before and I had little faith in AEDs controlling my seizures since they never worked for me in the past—I was just trying to stay open to something different with less side effects. At the time, my doctor prescribed me a new epilepsy drug and I also asked for a rescue medication, but they weren’t open to prescribing it to me because they just wanted me to get on an everyday medication—this was right before COVID when telehealth wasn’t as widely available, otherwise, I would have seen my former neurologist. Just keeping yourself educated in the epilepsy field can also help you ask better questions with your doctor and even share helpful information if you happen to meet others with epilepsy which brings me to my next recommendation. . .

Helping others with epilepsy

Accepting your epilepsy will help you be able to be open to helping others with epilepsy. It wasn’t until I accepted my epilepsy and used the indescribable pain of returning seizures that I was open to talking about my experience more and helping others who I just happened to meet at different times in my life. I even met someone who was good friends with a family whose husband had epilepsy and was thinking about brain surgery and they wanted my opinion—I shared my experience and gave them my phone number if they ever had any other questions. Helping others by sharing your experience with epilepsy can also feel healing to you along the way. You may feel like you are doing something good with the reality of such a difficult and heartbreaking health experience. I had some different opportunities to help others in my own life and then when I started trying Neureka Sleep and working with Neureka a few years ago, I naturally used my challenging experiences to help others and it’s definitely been a healing journey. I’ve also loved creating relationships with other people in the field and connecting with so many people who understand epilepsy whether personally or as a caregiver.

Simple ways you could help other people with epilepsy include sharing your story (feel free to email me at amber@neureka.ai if you are interested in the Neureka blog) or you can also share your story with Epilepsy Foundation and CURE Epilepsy just to name a few. If you are interested in meeting people in person, check out my helpful support and resources article to see if there are any epilepsy organizations or foundations in your area, and even consider attending the world’s largest epilepsy event, the annual Epilepsy Awareness Day Disneyland in California. Miles Levin is also working on bringing epilepsy awareness to the masses with turning his award-winning short into a full feature film! If you are open to it, there are many different ways you can now get involved in the epilepsy community whether raising awareness, sharing your story, or simply being open to talking about your experience.

Sending many good wishes to you or a loved one on the road to accepting living with epilepsy and connecting with others throughout your life. You are stronger than you know!