My journey to diagnosis

Since my first experience with what I now know was a series of seizures, I have met so many people who have told me stories of their own struggles to find a diagnosis. What I have learned these past 9 years is that I am one of the lucky ones, to have been diagnosed as quickly as I was. It took six months or more before I was "officially" diagnosed with a seizure disorder. Shortly after that the word "Epilepsy" became a common word in my vocabulary. I was reminded constantly that I had Epilepsy now, as I drugged myself daily and sometimes every couple of hours with medication that would drag me down to the lowest of lows.

Those six months were the longest six months of my life and were also some of the most challenging to me as a person. Initially, after that first "episode" in May of 1998, my life felt like it was moving in the right direction. I was a newlywed and was trying to settle into a new role as a wife. Once some time had passed after my trip to the ER in Boca Raton and I was back home in New Mexico, I was able to put the whole incident behind me and move on. I honestly did not think twice about it, until...

A few weeks after returning from Florida, I started having brief moments of odd feelings or sometimes I would feel lightheaded or weak, as if I was going to faint. Our house had several levels of stairs to access the different floors. My office was in a loft area at the top of the house, so I made many trips up and down daily. There were times when I felt like I was going to fall down the stairway because I felt like passing out. I would feel as if I were on the verge of losing consciousness but then never would. The feeling would eventually pass.

During this time, when I was not traveling for my job, I spent time writing documentation for the software company. I would sit for hours at my keyboard and write. There were times I would look at my hands but I would not be able to feel them or move them. I would feel numbess in my arms and fingers. Other times I felt like my heart had skipped a beat or that I wasn't really there. Sometimes it felt like my heart was going to stop beating. But I would check my pulse and sure enough I was still there! But my pulse would sometimes plunge to a very low number. These were the times when I would sometimes feel faint.

My husband and I had decided to try to start a family. I had a history of missed periods or no menstruation at all, so I wasn't sure how difficult it would be for me to get pregnant. But because of the sporadic cycles I would not know if I was missing a period because that was a pattern I had or if I was truly pregnant. When all of the odd feelings of numbness or feelings of passing out started occurring I began to suspect that I was pregnant. I was buying pregnancy tests all of the time, but they were always negative. I could not understand why my body was feeling so odd some of the time. I just assumed it must be a pregnancy.

At about this same time, my husband and I found out that he would be getting assigned to a different domicile once he was through his captain training as an airline pilot. I knew this meant that we would be leaving New Mexico. Our house would go up for sale and we would wait until we found out when and where we would have to relocate. I received a promotion to a Vice President position at the software company, but I would have to move back to Nebraska to take the role. My husband and I felt that it would be a good career move until we found out where we'd be permanently relocated. It could be a year or more before we'd be permanently assigned somewhere.

Our house went up for sale and I moved back to Nebraska to an apartment, while my husband continued his training and flew in and out of different cities each month. We would try to see each other as much as schedules would allow. I slipped into my new position at work and was also happy to be around my family again, as they all lived in Nebraska or surrounding areas. Even with all of the exciting changes I still yearned to be back in New Mexico in our home, but I knew this was the right decision for us at this time. I would ride out my time here until we knew of a permanent relocation.