Tuesday, November 25, 2014

My Epilepsy Story.

It's November. November is the most important month of the year to me, for so many reasons.
(not to be confused with October, which is my favorite month, for different reasons.)

One extremely important thing about November is that it is National Epilepsy Awareness Month. Now, I know that I have been on my soap box about epilepsy so many times, on so many social media platforms, but I have to talk about it here, at least annually.

My story starts back when I was a child, back when I first heard about epilepsy. It was probably 1996 or 1997, when I was 9-10 years old. My dad had a seizure when I was at his house for the weekend. I didn't know what it was, but I could hear him. Thankfully, he felt it coming on and he left the room so that he would not upset my brother or me. He went to the back of the house and I heard strange noises coming from back there, but I did not go back there to check on him. I was concerned, but I was also worried about my younger brother being worried, too. I stayed and continued to play video games, trying to figure out what the strange noises were.

That night, after my brother, Cody, went to sleep, my dad sat me down and explained epilepsy and seizures to me, in the best way that he could explain it to a child. I distinctly remember that conversation. He said that his brain sometimes sends bad signals, that it can make his body do strange things. I tried to understand, but clearly could not truly comprehend seizures or epilepsy, because I was so young. However, I was glad to know that he trusted me enough to try to explain it to me, so that maybe I could understand what was going on.

In August of 1997, my dad died from a massive seizure. I was ten and my brother was eight. It was so difficult to move past that massive loss in my life.

Sudden Unexplained Death from Epilepsy (SUDEP) is a real thing and a problem. Someone with epilepsy is impacted and affected by so many different things, numerous risk factors. Alcohol, irregular medication use, frequent changes in medication, a history of seizures during sleep, and many more factors go into the risk of SUDEP. It is scary to think that so many people have died from something that the public, in general, seems to be so unaware of.

I remained uneducated and unaware for a very long time, for over ten years after my dad died. I knew the little that I knew about his epilepsy and about his death, but I did not go out of my way to learn any new information.

(this is my dad and me, circa October 1986)
Then, in November of 2008, everything changed for me.

When I started having seizures, I was going through a time of high stress. I was in my fourth year of college, but had just changed my major, adding on a few more semesters of school, I had two jobs and 18 credit hours. I sometimes worked until 1 or 2 in the morning, and then would go back to work at my other job at 8, before I headed to my classes for the day. It was also a time of relationship drama, as I was in the middle of a very unhealthy relationship with somebody that I worked with. All that being said, all of the stress that was on my shoulders at that time, I did not have enough epilepsy knowledge to truly understand what was happening in my brain.

My first seizure, I was home by myself. I was reading a book on the couch. I remember feeling strange, kind of like some kind of deja vu, then I started to feel panicked and anxious. I hallucinated, also. Afterwards, my heart was racing and I felt nauseous. I had no idea what had happened, but just let it go. I had minimal knowledge about epilepsy or seizures and had no inkling that I could have just had a seizure.

As the "panic attacks", as I called them, started to become more frequent, I started to wonder if I had schizophrenia. As a psychology major with an interest in psychological disorders, schizophrenia was one of my biggest fears. I was very aware that the typical onset of schizophrenia was in the early twenties, which, coupled with the hallucinations, led to my belief that I did have schizophrenia. I did not actually tell anybody about my fear, called my seizures "panic attacks" and, really, only told two people that I was dealing with them.

At the end of February 2009, I had my first actual tonic clonic seizure. I was at work and chopping lettuce for some salad preparation. I started to have one of my "panic attacks", but noticed that that one seemed a little bit more intense than usual. My vision started to get blurry, then I remember waking up with a group of people standing around me. I was lying on the ground. It felt like I had been dreaming. Somebody said that it looked like I had a seizure and asked if I had a history of seizures. I said no, but started to think seriously about the past several months.

After an emergency room visit, several tests, including an EEG (yes, that was weird.. lots of tubes sticking out of my head.), wearing a heart monitor for 24 hours, among other things, I was diagnosed with.. nothing. All of my tests came back normal. I had a syncope episode.

I was angry and frustrated with that (lack of) diagnosis. I knew that there was something bigger, something deeper than just passing out. If that was the case, I was sure that I wouldn't be having the episodes so frequently. I clung to the idea of the epilepsy, of seizures, and researched as much as I could about them.

I had my second tonic clonic seizure in June of 2009, several months later. I was asleep when I had my seizure, but fortunately, I woke my roommate. Knowing about all of the months of undiagnosed episodes, she wrote down, in detail, everything that she saw. She ended up waking me up at some point, I called my mom, who came to pick me up and take me to the hospital.

That time, I got a diagnosis, medication, and a bunch of emotions to deal with.

Partial complex epilepsy..
So, typically, it doesn't look like I've had a seizure. I don't often have tonic clonics, though I have had them. You would not typically, by looking at me, know that I'm having a seizure.


It has been a long road getting accustomed to my diagnosis, my medications, and my lifestyle. I do have it better than so many people, but that doesn't mean that I'm not impacted by seizures, by epilepsy. It is a part of my life.

I do talk about my epilepsy often. I try to explain different types of seizures, basic first aid, and different facts about warning signs and so on. I think that awareness is the most important thing. If I can make one person more aware or more interested in spreading that awareness even further, I will have accomplished something. If I can get people to seek out more information, to learn something about epilepsy, I will be even more accomplished.

I advocate for knowledge, for awareness.. I believe in talking about my epilepsy, so that someone else can learn something new. I didn't know anything about epilepsy until it touched my own life personally. I also advocate for more research. Neurological disorders are important. So important.