How one mom is beating epilepsy after 26 years

This article is completely written by Amy Sayers, sharing her experience with epilepsy. This is the first part of a multi part series sharing hope and experiences of those individuals and families overcoming epilepsy. Amy Sayers is a user from Sturgis, Michigan.

Life was good. Even though I had a history of seizures. It was especially good because those seizures had kept themselves at bay for over 26 years. Good job brain! But — we all know how life has a way of twisting and turning. The path before us isn’t always well lit and every once in a while, we fall. More accurately — we trip and our face introduces itself to the bedroom floor, we sprain our wrist, bite our tongue and claw the palms of our hands. We can’t figure out how to get up, or which way to go because epilepsy jumped up like a big old root on my path and tripped up my life, and the lives of my family.

So — that’s how things were playing out for me. First seizure at 16, one more at 18, and then26 years seizure-free. Life was good. Epilepsy wasn’t even on my radar anymore. I had for some reason, beaten the big “E.” Enter stage left, walking from the bathroom into the bedroom on Christmas Eve, my first reoccurring seizure.

That was about ten years ago, and then, four years ago I was having head pain and experiencing an aura in my 5th grade classroom. My husband came and got me and took me directly to the emergency room. There I was given a great deal of medication to stop both the pain and the seizures. They decided to keep me overnight for observation…and we are so thankful they did. Sometime in the middle of the night, my husband tells me that I turned to him and said, “I need help.” The next thing I remember was waking up in ICU with many monitors on me. Apparently the medications they had given me taxed my respiratory system and put me in to asystole. My heart stopped for 9 seconds. I am thankful I don’t remember this experience. I didn’t understand why I couldn’t leave the hospital the next day. I oversaw the east sideline at Notre Dame Stadium and it was the day of the spring game and I had to be there! It was then that the doctor, trying to talk sense in to me, had the nurse bring in the EKG readout that showed the 9 seconds of flat line. This was very sobering to me — and my world tilted a little bit.

Then, in April of 2015, almost a year ago, (we are gearing up for a big celebration,) I went down in the school parking lot with more seizures.(Hey colleagues, check THIS out — a humbling experience, to say the least.) They could not get them to stop. I was transferred to a hospital that was an hour away as it had a neuro ICU unit and I could be monitored both with an EEG and video monitoring. Over the next two days I experienced over 40 seizures. The worst part of this was coming out of those seizures and seeing my grown girls and their husbands see me in such a state. The pain on their faces was the greatest pain that I have felt in my life — far greater than any physical pain from having a seizure…and this is where the Neutun seizure app comes in to my story.

When I first began experiencing my seizures again, it turned our world upside down. I am a technology integration coach and serve all the schools in our district. Not driving was something that had to be worked around…luckily I have an amazing husband and work with some of the best people ever. One of the other hurdles that I had to get over was an over-protective husband. There were times I felt smothered by his attention. If I had a myoclonic jerk — his eagle eye would detect it and ask me “Are you okay???” If I had a head pain out of the blue and shut my eyes and held my head — he was at my side at an instant (and sometimes still is.) Every day before I leave home, it’s “Do you have your phone? Do you have your medicine?” And I suppose now with my amazing Neutun app on my watch — “Do you have your watch on?” One doctor appointment early on I mentioned to the doctor that it truly was irritating to me that David was offering too much attention and that I was feeling quite smothered by it…and this is what he said to me:

“Amy, you have to remember that a seizure is not only a serious event for you, but it is also a serious event for those that will witness you having one — especially your loved ones. Think about what they are seeing. You don’t see yourself, but they see you in a state that is very distressing.”

This really flipped a switch in me. I had never thought about what my epilepsy was putting my family through. David doesn’t like me to drive out of town by myself. I go to many conferences with my colleagues that are either out of town or out of state, and this leaves him feeling very helpless should I have an event.

The Neutun app has really made a difference in our lives.

It gives both David and I an assurance and peace of mind that when we are not together, that he will be notified at a moment’s notice if I am having a seizure.

You see, this app is just not for me, it is for my family. I may be the one wearing the watch, but it is for those listed in my contacts just as much as it is for me.

I am so thankful for the team of people behind the Neutun app. These people has been extraordinary to work with — and you can sense their commitment to making lives better for those of us that wake everyday unsure of what the day will bring when it comes to our epilepsy. I may not know what my epilepsy holds for me in the future, but thanks to this app, I know my care in the case of an event will be prompt and my family will be able to access me as quickly as possible. If I never have another seizure, I will continue to wear my watch with this amazing app. Thank-you, Neutun team, for realizing this important need within the epilepsy community. You are making a difference in our ability to feel safer as we live out our lives…and you are helping our families feel safer, too.

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