Wednesday, March 15, 2017

#Meg's Long QT Journey: The Second Time's the Charm (Or Not)

The Second Seizure

At the end of my last post, I finished by saying that life returned to normal. And it did for awhile. That all changed sixteen months later on July 8, 2000 when I was13. My family was down the shore for the day. Sometime in the afternoon, we had been watching the rides for a couple before we turned around to continue on our way. As soon as we had turned around, I felt a seizure coming on. You may be thinking how did you know that? With each of my seizures, I experienced this feeling that's undescribable (maybe if you're someone who's had seizures, you know what I'm talking about). Anyway, I grabbed my mom's arm and simply said I didn't feel good; I didn't want to fall and hit my head since we were on a boardwalk. We had just passed a bench and she tried to lead me to it. Tried, I say, because I couldn't move. My legs went stuff and yes, I felt it. It was like my brain was telling my body to move, but I just couldn't. Imagine telling yourself to do something and you can't - it was one of the scariest things I have ever been through. I did go into the seizure a few seconds after that, with my parents laying me down and my dad cradling my head. A pier attendant administered oxygen to me until the medics got there. Now, this is where it gets interesting. Obviously, I was taken to the hospital. However, I can remember some things before coming completely to. I was able to feel them rolling the stretcher across the boardwalk (in taking me to the ambulance) and people talking, but it didn't make sense to me. While I was experiencing this, all I saw was white. This sensation didn't last long and then I went back out. I came to sometime in the ambulance on the way to the hospital, which was like twenty minutes away. Once again, I was observed for a couple hours before getting discharged with the orders to follow up with my doctors. This time around, I only had two tests: an ambulatory EEG and a tilt table test. The ambulatory EEG was like a regular one, except that it was done outside the hospital for 24 hours; the two differences are that the wires attached to your head are wrapped in gauze so they don't fall off and attached to a box that had to be plugged into a wall. The purpose of the tilt table test is to recreate an event - to try to make you faint, etc. You're strapped to a table that's then tilted to an upright position (almost as if you're standing but not quite). The first twenty minutes or so is spent to see if something or any symptom will happen on its own. In my case, nothing did. Once back down, I was given a drug to accelerate my heart rate and then it was back to the tilted position. It was supposed to feel as if I had been running. It was much worse. The pounding sensation was the most uncomfortable feeling in the world. It's the same amount of time each round, but within ten minutes, I started to feel lightheaded and like I was going to faint. After a couple minutes, I was told that my blood pressure dropped really low and despite how I was feeling, there was talk about doing it again. It wasn't and once I was free and able to sit up, I was given juice and crackers, which helped me feel better. At the same time, my parents who weren't in the room were told I had had an event. This was a test I don't ever want to experience again. After all was said and done, my family and I still didn't have answers.

It was around this time that I knew something had to be wrong with me; I just didn't know what it was. Seizures are most common in epilepsy and even though I was cleared from having it, I couldn't help but wonder if I had that anyway. I started having trouble with anxiety, but more on that later. At 13, I didn't want to be going through any of this; I just wanted to be a normal teenager. And since I was going through such a hard time, I just wanted and needed answers.

The much needed answers would be coming in a few months. But first, another seizure would occur. I'll be writing about my third seizure in the next post and then finally I will be explaining what long qt syndrome is.


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