The evolution of a seizure disorder

Once I was back in Nebraska and working it seemed as though those odd episodes that I had been having had subsided. I went to work daily and spent many hours at the office since I did not have a spouse to go home to. Work consumed my time and I was happy to pass the days quickly hoping that at some point I would receive a phone call from my husband telling me where we would be moving next. I was not traveling as much for my job, but had arranged an agreement with my CEO that I would be able to fly back to New Mexico to our home every couple of weeks to check on it while it was up for sale. I could fly for free since my husband worked for a commercial airline so it was not a hardship to the company and I was able to work remotely.

Because I worked at a software company there were always new things to learn and I managed Client Services, which involved the technical writing, technical support, and training departments. It was a busy job but I loved it. There were a lot of things to learn and I felt like my memory was always so sharp because of the type of work I did. The types of information that I had to retain when new software was released was sometimes intense but it was always a challenge and kept me going.

One of these busy days in the office, I was standing behind one of the staff members in the technical department and was leaning over his shoulder showing him some things in the software. I suddenly felt a rush of adrenaline. I had a funny taste in my mouth and for a second or two my head dropped down unexpectedly. I panicked, remembering the episode that I had had in Florida months earlier. I had the same type of feelings. My legs felt numb and my face and lips felt bloated and paralyzed. I excused myself and went into the restroom hoping to pull myself together.

Once I was in the restroom I splashed cold water on my face and saw the same pasty white pale skin I had remembered from my Florida trip. It made me sick to my stomach, as I wondered if I was having a stroke. I sat down on the bathroom floor because I felt like I was going to pass out. Every few minutes I would have the same type of quick head drop that I had experienced earlier. Because I was afraid to be alone, I made my way to the Human Resources office where a woman I had known for years was working at her desk. I told her I wasn't feeling well and that I thought I was going to pass out. She told me to sit in a chair and put my head between my legs. I tried to convince myself that this made the feelings go away, but that wasn't the case. After a few minutes of this ridiculous pose, I ended up laying on the floor because I felt as if my whole body would tumble forward.

I had her call my father who worked about 15 minutes away from my office building. I was afraid to drive home. He came right away and escorted me to his car. Once we were in the car and started to head home, I felt that rush of adrenaline again and that funny taste came back. I leaned forward and grabbed the dashboard. I told my father that I did not feel well and that something was happening to me. He asked me if he should take me to the emergency room. It did not take long for me to reply with a "yes".

At the emergency room, the doctor wanted to take blood to do a blood serum pregnancy test. I told them that I knew I was not pregnant. They asked when my last period was and I could not remember, as I was still skipping cycles and never had a set pattern. He assumed it was a pregnancy. Blood was drawn and the results were negative. I explained to him what had happened and that I had gone to the restroom at work to sit on the floor because I did not feel well. Fifteen minutes later he would come back to my side, tell me I was not pregnant and then proceed to tell me that some people feel like passing out if they have a bad bowel movement. I told him I had not had a bowel movement in the bathroom, and that I had just sat down on the bathroom floor because I did not feel well. Again, he stated that people sometimes feel lightheaded when they go to the bathroom. This was all completely irrelevent of course and completely ridiculous, but I was so tired and exhuasted from the episodes that I just really did not care anymore. I just wanted out of there.

My father drove me home and I tried to put the incident behind me. I felt ridiculous and embarassed. I started to think that I was making things up and that what was happening was not physical but just in my mind. Am I losing my mind? I normally was a very logical person. There was no explanation to anything I had experienced and no one saw any outward signs that there was an issue. I started to doubt everything. I even thought back to the episode in Florida and all of the odd feelings I had in New Mexico. These may be in my mind. My body was showing nothing.

Little did I know that this was trip two to the ER and eleven more trips would occur in the months that followed. Read more!

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. Read more!