By Amber Kaiser (main picture: Amber and her bird, Leo)
I’m not sure why, but it’s been particularly difficult to get myself to sit down and write more about my life living with seizures and epilepsy. Sharing personal stories makes you feel vulnerable and that’s not always easy for everyone unless you are around people you know you can trust. I’ve been wanting to share my Neureka Sleep experience in the hopes that we continue to reach people and families who live with epilepsy, because although I’ve been using Neureka Sleep for almost two years now, I still remember and understand how it was to use it for the first time. It really is life-changing and it’s amazing that we now have access to this potentially life-saving product today! Like many people who experience seizures and the multitude of side-effects, my life has been complex due to epilepsy, both with what people have seen and more with what people have not seen. I think many of us can relate to this concept in terms of living with any personal health challenge or condition, whether you go through it for a short time, or if it is life-long and fundamentally changes the way you live. About a year ago, I finally wrote parts of my story and shared details for the first time online. If you’re interested, you can check it out on the popular epilepsy educational advocate website, Brain Ablaze.
That’s why I’m so grateful to be working with our compassionate and talented Neureka Team and can use my experience to help us reach more people as well as connect with and create practical and life-changing services and tools to empower the epilepsy community.
Understandably, epilepsy has been a silent and hard to understand health condition since the beginning of time and some of us are just now starting to feel more comfortable talking about it. I think the creation of social media and recent progression in the medical field of epilepsy (all due to technology) have been major factors.
In 2001, I was diagnosed with epilepsy while I was in my junior year of college. It was really hard for me to accept it because of how I grew up and I had already moved away from my parents to finish school and everyone was busy in their own lives. My family wasn’t close; I had grown up in a military family moving around a lot. My boyfriend (later husband and ex, Chris) and a few close friends were my biggest support system in the beginning. As I started becoming aware of what seizures actually were and the side-effects, I realized I had my first complex partial seizure (now called focal onset impaired awareness seizures) when I was 5 years old. I remember the life circumstances and it was the strangest and weirdest and most uncomfortable feeling I had experienced at that point in my life. I had no idea what to think or how to talk about it, and it had just happened once. To this day, I wonder if my short staring spells that happened while growing up were actually simple partial seizures, but I just don’t know. I do know that I started having nocturnal generalized seizures (now called tonic-clonic seizures) in my mid-teens. They happened off and on throughout the years and looking back on it, stress was always a trigger. The first one witnessed was when I was 21, and I literally remember waking up to paramedics asking me questions like what my name was and then was taken to the ER. I remember feeling really confused and freaked out.
I also started waking up after them; whereas in my teens, I would sleep through them and wake up feeling exhausted the next morning with very sore muscles and seeing red dots around my eyes. I always thought it was really strange and wondered what was going on with my body. Realizing I had seizures later really scared me and the only way I was able to keep living my life like normal--or as I had planned to--was the fact that in the beginning years they were only happening while I was sleeping, so epilepsy was a deeply hidden part of my life. For many years, I was also in denial even when I frequently started having complex partial seizures during the day. The only time the reality of having epilepsy came back to me was when the seizures happened and when I had to visit the hospitals or doctors’ offices. I experienced huge amounts of anxiety during all my doctor visits. I continued moving into my late 20’s so it was also hard to see different neurologists. Some had private practices, others worked in hospitals. Looking back on it now, I wish that some of these neurologists had actually referred me to a hospital specializing in epilepsy, or an epilepsy center although I’m not sure comprehensive epilepsy centers existed back then.
The first doctor’s appointment I remember scheduling was at Texas Tech University Student Health Services, and honestly, I don’t think I was actually seen by a neurologist. I just remember being prescribed Dilantin which to me, personally, is one of the worst AED medications you can be on with detrimental side effects. In fact, there are some serious long term side effects of antiepileptic drugs that doctors don’t talk about so it’s always good to do your own research when considering AED drugs. I got myself off that right away and looked for a specialist soon after (a neurologist; I didn’t hear the term epileptologist until 2018). I then saw a neurologist with a private practice in Lubbock and he prescribed me Lamictal which back then was a newer drug with less serious seizure medication side effects. The Lamictal side effects were still tough though and I continued having seizures, but I kept slowly increasing the dosage over the years to a point where I was taking a very high amount—2,000 mg a day! Gratefully, the medication kept the nocturnal generalized seizures at bay, but I still had complex partial seizures at any time as well as complex partial seizure clusters while sleeping.
I had finished my degree, graduated and started a career in marketing, eventually working in the nonprofit sector in the Dallas area for many years. I also later consulted with a marketing agency, a handful of different nonprofits and served on the American Marketing Association Dallas/Fort Worth Chapter Board.
My parents got involved in my epilepsy about 10 years after I was diagnosed when my mom happened to witness one for the first time while I was in my 2nd EMU visit. Once she saw me have a generalized seizure, things started happening pretty quickly. I had already seen a handful of neurologists on my own at that point and had 2 EMU visits in different hospitals.
The thought was too scary to me at the time and I didn’t even consider it as a possibility until I saw another neurologist about 6 months later (one that a friend of my mom’s had suggested) and they mentioned surgery to me as well. At that point, I was on a very high dosage of 2 different AEDs and my seizures and seizure clusters weren’t getting any better. With the suggestion of this new neurologist at UT Southwestern Medical Center in Dallas, I went ahead and agreed to the brain surgery for seizures testing so I had a 3rd EMU visit at Parkland Hospital. When surgery was approved as an option, I met with the brain surgeon and gave it further consideration. Today, UT Southwestern’s Epilepsy Program is now considered a level 4 Epilepsy Center. I also met with someone who had the same surgery and talked with a few other doctors to hear their thoughts. Then I met with the brain surgeon two more times to discuss before finally deciding surgery was the best option for me at the time.
In many ways, I felt like I was starting my life all over again--getting used to life’s sensory inputs in a different way (particularly sound and light), walking, reading and writing, planning, decision-making, learning to navigate short-term memory challenges and many other things. I was really experiencing life in a whole new way, and despite that, I was so grateful to not be having seizures again. It’s hard to describe, and although I feel like I still don’t write as fluidly as I used to, I’m really grateful I was always a naturally good writer so it gave me an advantage before experiencing the effects of surgery. My brain missed the way it used to work and that has been the toughest adaptation that took me many years to finally accept. I can imagine anyone who has lost a limb, or other physical or cognitive ability can understand this concept. I was so happy and grateful to have had surgery and it prevented seizures for about 7 years; it was the learning to live with how my brain worked differently and still trying to meet my own and others’ expectations and living in this world like I did before that made it indescribably challenging especially the first few years. I think I have naturally become more creative with having to think differently and I’m an even better problem solver now. Although I started having clusters of complex partial seizures again, they only happen while I’m sleeping and my triggers are clear so I have done my best to create a lifestyle that minimizes my seizure triggers, and therefore, seizures.
Eventually, I decided to get back on an AED and slowly increased the dosage until I got to a point personally where I just wasn’t going to increase it anymore. I didn’t want to be in the same boat of taking high doses of AEDs and experiencing all the side-effects while they weren’t even working so I spent time trying alternatives—creating a healthy environment and daily routine, reducing stress wherever I could in my life, getting good sleep as much as possible, taking CBD oil regularly at night for a while, and most recently, I started taking a rescue medication at bedtime on nights that I feel I’m more likely to have a seizure cluster based on my triggers. That has been the best decision I’ve made in a long time; it’s been about 6 months now since my last seizure cluster which is the longest I’ve gone seizure free since they started again in 2018. I’m grateful to Ray for mentioning rescue medications when I had an open conversation with him while we were working at Epilepsy Awareness Day Disneyland (EADDL) last November. When I got back on medication 3 years ago, I had asked my doctor at the time for a seizure rescue medication since my seizure clusters were so isolated, but they didn’t prescribe it to me; they just wanted me to start taking an AED every day. It never occurred to me to ask for one of the rescue drugs again and when I changed doctors last year (going back to one that I had during my surgery), I asked him for rescue medication after my conversation with Ray and my doctor was actually surprised I wasn’t already on one.
No matter what you are going to see the doctor for, remember, you are the one going through the experience, and being open and honest with the doctor as well as doing your own research and asking questions, is key to making sure you receive the best care. It's especially important for people with epilepsy because it’s still a widely unresearched field that isn’t openly talked about or well understood--yet. There are a lot of differences in quality healthcare between doctors (as I’ve experienced) and you really just have to know what to ask, what to research and be open to changing doctors and hospitals. With the internet, social media and other communication tools we have now, it’s much easier to find epilepsy resources today. There have also been lots of private epilepsy foundations and organizations that have been created by families impacted by epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy) even within the last 10 years. I also wrote an article for Brain Ablaze sharing my top resources for anyone new to epilepsy which includes Neureka. You can also search by state for a plethora of resources and support options from Epilepsy Foundation, Epilepsy Alliance America and private epilepsy foundations as well as organizations in Canada here.
I was searching to see if there happened to be anything that helps detect seizures at home like they do in the EMU units. I came across Neureka on Twitter through Brain Ablaze and we have been connected ever since. Like I mentioned at the beginning of this article, to have Neureka Sleep available today is really amazing and the fact that we are always updating and making the device and software more user-friendly and staying open to future AI capabilities. I feel safer every time I wear Neureka Sleep and can imagine a caregiver feeling the same way. In fact, I was reminded early last year when something personal happened one night and it was very clear to me how much trauma I’ve been through living with epilepsy. I knew my Neureka Sleep was going to alert so I took my ring off and called 911. The emergency team came out for a while and Chris came to help as well.
It was a very emotional experience to say the least. When I went to bed the next night, I clearly remember using Neureka Sleep and I felt safer than ever being able to put the ring on. Having my body being monitored and that connection with my emergency contacts made all the difference. I highly recommend Neureka Sleep and the free Neureka app to anyone with epilepsy. It helps you stay connected to your body, feel safer and gives you medication reminders and reports you can share with your doctor. If you have caregivers, it will give them just as much peace of mind. The medication reminders, caregiver alerts and reports you can generate are all very helpful. We continue to work on devices and services that make living with epilepsy a little easier, giving you more peace of mind, control and the feeling of empowerment in your life. If you have questions or want to learn more, feel free to reach out to me anytime at email@example.com or our team at firstname.lastname@example.org.