My Story

Today I submitted an article to a blog called Mosaic-My Epilepsy Story, which can be found at https://www.myepilepsystory.org/. It is a blog for women and girls to share their stories about epilepsy in an effort to help each other. If you go back to the beginning of my blog, my story starts from 2017, when I had my last tonic clonic seizure. Today, I decided to go back to the beginning, to when it all began . . . when I remember having my first seizure.

In 2007, I was at the doctor’s office with my husband. I was a few months pregnant at the time. The nurse came in began asking me routine questions that nurses ask you when you are three months pregnant.

While she was taking my blood pressure she asked, “How have you . . . “

All of the sudden, I could see her lips moving, but I could not understand what she was asking me.

I looked at my husband, Mike, for help. He looked at me quizzically, waiting for me to answer. I could see his lips move. He said something, but I could not understand him.

I looked at the nurse again. I did not know what they wanted me to say. I was not aware of it, but one of my arms was shaking. I was able to speak. I could stutter, “I’m s-s-s-orry.” The episode only lasted a few minutes. After it was over, I could understand questions again.

The nurse called in the doctor, and he checked me out. But he did not say anything about what happened. For the rest of that day, I noticed I did not feel well. I went to work, and the same thing happened in front of my students. I was a high school teacher at the time. I was standing in front of the classroom, and a student asked a question. I could not understand what she asked. I remember starring at the kids, and they were waiting for me to say something, and I did not know what to say. I did not need to sit down. But I imagine that my arm was shaking. It always did. And then it was over, and I think I said, “Sorry.” I can’t remember if I ever answered the question or not. What followed that night was a really bad headache. I later began to call them migraines.

I can’t remember when I first began to have these “spells” as I called them and the migraines that followed. But I began to keep track of them in my phone, and I found that they would fall around my monthly cycle.

My doctor referred me to a neurologist. And thus began my journey with catamenial epilepsy. It took 10 years, the help of my neurologist, my hormone specialist, a change in diet, cutting out alcohol, and a lot of prayer, but thankfully, I am seizure-free now.

I am still struggling with the side effects of the medication that I am on, but I try to focus on asking God to fill my cup so that I am not trying to fill it myself. There are many triggers for seizures like stress, hormones, heat, head injuries, alcohol, forgetting medication, and so forth. I may not always be able to control my stress, but I have been able to balance my hormones by seeing a specialist. I can make sure that I drink plenty of water, especially on hot days. I stopped racing my bicycle. I had been in several bike accidents over the years, and had had several concussions, which may have been a trigger.

But cutting out alcohol was pivotal for me. I did not always drink, but after I had my son, I looked on the Epilepsy Foundation website, and read that the research shows that I could have one or two drinks a day without effecting my seizures. Well this is very fine line. I only had two tonic clonic seizures, and they were both in the summer. And I am sure that dehydration and alcohol were triggers. I was pushing the two-drink boundary. Mixing alcohol with anticonvulsants is dangerous. My seizures were absence seizures until I began mixing alcohol with the drugs.

I stopped drinking on June 19th, 2017, and I have not had another seizure since. But that is also due to the fact that I have worked on controlling the other triggers, too. I also listen to my doctors. When my neurologist asked me to increase my anticonvulsant medication, we worked together to find the right amount and the right time of day that would work for me so that I could start driving again. I also carry extra medication with me in case I forget to take it. Not taking my medicine could cause a seizure, and I have had a good run. I don’t want to stop now.