Monday, May 14, 2007

A seizure disorder diagnosed

During those six months prior to diagnosis, the episodes that I experienced evolved and took on a life of their own. The funny taste in my mouth did not always come, but I almost always felt like I was going to pass out or that my head would drop if I did not fight to keep it upright. As time went on and emergency trips revealed nothing, these moments of odd feelings turned into things that became more physical and became more noticeable. The episodes also started occurring more frequently. They started out occurring every few days, and then went to daily and then eventually several times a day. It was very frustrating. I would try to remain calm during them but was so confused and so afraid most of the time. By the time I'd get to the ER the episode would have passed.

At some point, I went to see a family practice doctor. One of the emergency room physicians referred me to him. At my appointment I was seen by an elderly doctor who was apparently getting ready to retire. He said that he could see me one time. I would have to be passed to someone else if I needed to continue visits for anything. He was the sweetest doctor. I had a complete breakdown in the exam room. I could tell he took pity on me. He said that he would refer me to a neurologist. He also thought it would be a good idea for me to wear a holter monitor since I kept describing my low pulse and the moments when I would feel as if I was going to lose consciousness.

The next day I headed to the hospital to get fitted for the monitor. I also had a neurology appointment with the local neurology group. I was anxious to see the neurologist because I felt like he may be able to help me with whatever was happening. I explained my symptoms to the neurologist. He said that it sounded like I was having anxiety attacks. This made sense to me somewhat, but I was having them because something else was happening before the panic attack.

I had also been scheduled by the family physician to have an EEG at the hospital. The EEG revealed nothing, or at least that is what the neurologist told me when I went back for my second appointment.

In the meantime, I was having the episodes several times a day. New symptoms were being added. I would typically have the funny taste in my mouth or I would feel like passing out. Eventually, one side of my body would shake or tremor during this time or I would have a more violent jerk after the odd feelings would pass. Most of the time my arms would lock and shake uncontrollably. As time went on, tremors in the legs were added to the ritual. I found that my back and muscles ached afterwards. Most of the time the entire episode would last around 15 minutes or so.

Things seemed to be evolving steadily. I felt like things were getting worse but no one knew what was wrong. I saw a heart specialist who said that my heart was fine. The neurologist was frustrated with my insistence that something was wrong. He ordered another EEG and an MRI.

Steadily, the episodes became more intense and I started to worry about driving. Sometimes it felt as if I did not have enough warning ahead of time. I worried about not being able to pull the car over to the side of the road before things would start to fall apart. My parents and co-workers started to take turns driving me to work each day.

Things evolved very quickly. I started to have biting or uncontrollable movements of my jaw and mouth. My teeth would uncontrollably go through a biting frenzy. There were times when I had to lay down to get through the episode. Other times I could hear everyone talking and I was aware of things, but I was not able to open my eyes. My eyes would sometimes go crazy with movement. There were times when I felt like I was floating outside of my body observing things. I would sit through meetings and feel as if I were in a dream. I sometimes would not remember what was said afterwards. I found that just moving from my office down the hall and into someone else's office was not always a successful journey, as I would have to sit down part way just to have an episode. I would shut my office door and get to the floor in time for the next episode. Things were crazy and I felt my life was out of my control.

I found that night time was no fun either. Falling asleep concerned me. What if I did not wake up? I worried all of the time. My night time routine for these episodes differed from my daytime routine. They were much more violent. I would have intense jerking and uncontrollable biting. My head would jerk back and forth uncontrollably. I would almost always have a headache afterwards. I was conscious through it all. I remembered every moment. I found that sometimes afterwards I would not remember names of people. I could not remember my parents names sometimes after an episode, but I always knew who they were. I would try to recall my husband's name or my sister's or brother's name. I had a hard time remembering things that were short term too.

My second EEG was done by the same hospital EEG technician. He was a very nice guy and seemed to have sympathy toward my situation. For this second EEG I had 24 hour sleep deprivation and I also was instructed to stop taking the Ativan that the neurologist had prescribed for my 'panic disorder'. The EEG technician also used the strobe light during my test. I felt exhausted and stressed out. My MRI was scheduled to be done right after my EEG. I was worrying about that as well. The EEG and all of the stimulation that came with the test sent my body into another frenzy of movement. The strobe light, even though my eyes were shut, was so annoying that I felt like I was overstimulated and that I would literally lose my mind! When it was over, the EEG tech told me that he felt that he had recorded something that would help me. I told him that the doctors do not believe me. He said that what he recorded that day would help me. He wished me luck on my MRI, but also said that he was concerned for me and felt that the MRI might hold a clue for me. This worried me, but it was almost a relief to know that someone believed me and I wasn't crazy! Read more!