Not driving was no fun.  I didn't enjoy being the passenger.  A person I worked with lived nearby and so I paid him, and we car pooled.  On the days he wasn't available, my wife dropped me off at work.  When people I worked with asked why I couldn't drive, I joked that I had gotten another DUI.  This was a way for me to break the ice.  They all knew I didn't drink alcohol at all.  It was kind of embarrassing telling people I had seizures.  I was worried they might treat me different.  At the same time I wanted to be safe, so I made sure to tell my managers and other people I was around a lot; such as other Boy Scout volunteers.

Since I don't lose consciousness during my seizures, or fall, they aren't likely to be unsafe for me.  When people would ask me what they should do for me during a seizure, I would ask that there isn't a large crowd gathered around me, as that would make it more embarrassing for me.

My seizures continued from the fall of 2005 without improvement, even on Keppra (Levetiracetam).  They all started the same - with a deja vu feeling.  Their intensity varied.  Most often I was aware it was a seizure the entire time.  Only rarely did I have one with jamais vu, the opposite of deja vu.  Often during my seizures I had various hallucinations.  Some of these were gustatory or olfactory, meaning I tasted or smelled things that weren't really there.  Sometimes I even saw things that weren't there.  This was generally people, who might even talk.  These hallucinations weren't of such intensity as to seem normal or real.  It was more like a person, or group of people had just flashed through the scene and maybe said something when they were there.  I could still recall their faces during the seizure, but afterwards couldn't remember what they looked like.  During the seizure I sometimes felt like it was the same faces I would see each time.  I'm not sure if it really was, or if that was just the deja vu feeling.

I insisted my neurologist discover the reason for my seizures.  Each time he insisted it didn't matter what was causing them, but that we get them under control.  I understood the need to control them, but felt if we knew the cause that might be easier to do.  I continually argued with my neurologist and gastroenterologist about the Asacol I was taking for ulcerative colitis.  I strongly felt that it was the cause of my seizures.  They continually reassured me that such was not the case.

By January my neurologist had wanted me to take a second medication for some time.  I was reluctant to do so. I felt that one medication, Asacol, had caused my seizures and was fearful of side effects.  He finally got me to agree to add another medication if a new EEG showed seizure activity.  An EEG was scheduled in about a week and a half.  I went home and stopped taking the Asacol.  Within a few days my head felt better.  The tingling feeling was gone.  I could estimate what time it was.  I remembered people I met throughout the day.  I had the EEG.  No seizure activity was detected.  

When the neurologist reviewed the findings of the latest EEG I told him how I felt and that I had stopped taking Asacol.  He was finally convinced.  He agreed I should never take that medicine again.  My seizures decreased after stopping the Asacol, but never went away.  The intensity of my seizures also changed.  I no longer had visual hallucinations with them.  I never had the jamais vu feeling.  In addition to the Keppra, I was eventually given Trileptal (Oxcarbazepine) for seizures as well.  I immediately noticed that I felt more tired from the Trileptal.  Each time the dose was increased, I felt more tired for several days.  If I lay down I could quickly fall asleep.  After about 8.5 months of no driving, I was finally allowed to drive.

The gastroenterologist was not amused that I had stopped taking the Asacol.  He tried me on another mesalamine medication, Colazal.  After about a week my head started feeling like it had on the Asacol.  I stopped taking it and was reassured by my neurologist that that was the right thing to do.

As far as my seizure activity, not much changed the next several years.  On average I had seizures every 2-3 weeks.  I would have a few of them over about a 2 day period each time.  After I had my colon removed (see the colitis blog) I had a seizure the same day or the following day.  Then I did not have any seizures for over a month.  That was probably the largest single break in my seizure activity.

The next day was Saturday.  As I was in the bathroom getting ready for the day, I experienced the same things I had the day before.  As it was at work, I didn't recognize anything or anybody (even my wife) during the episode.  After the episode was over however, I remembered how it started as well as the episode itself.  I was standing and never lost consciousness.  It seemed to last 5 or 10 seconds to me, but my wife stated it was a couple of minutes.  I realized after this episode that I had awoken a couple of times during the night, a few days earlier, with a similar sensation.  I considered it to be some sort of dream-like state and thought nothing of it until now.  The night before I had promised to go to the doctor if it happened again, so to the doctor we went.

We went to an urgent care facility.  It was Saturday and I didn't really have a regular doctor.  After all, I enjoyed being healthy.  Up until my colitis symptoms started I had been jogging 3-6 miles per day 3-6 times per week.  I felt old waiting to see yet another doctor.  My body seemed to be falling apart.  The Physician's Assistant we saw explained that this was likely a seizure and that he would like to refer me to a neurologist.  He then stepped out to check with the doc really quick.  When he came back in he said it could also have been a panic attack.  I had seen panic attacks before and was sure that was not the case.  I was however, unfamiliar with seizures like the ones I had.  I had only been aware of grand-mal seizures and the type known as starring spells.  He gave me some medicine to try for panic attacks.

We returned home where I threw the medicine away.  A few days later I visited the neurologist I had been referred to.  He asked many questions about the episodes and explained that they were complex-partial seizures.  He considered them to be complex-partial instead of simple-partial because I lost track of time during them and therefore had an 'altered level of consciousness'.  He asked if I had a pilot's license or CDL.  I had neither.  He told me I likely would never be able to get those as I now had been diagnosed with epilepsy.  He told me I couldn't drive until my seizures were under control for 6 months.  I had come to the office myself so I drove home.  I cried on the way, feeling sorry for myself.  I wondered how this could happen to me when so many people who don't seem to take care of themselves don't have these problems.  After arriving home I started what felt like being grounded from driving.

I was a loan officer at a local credit union.  I had worked there about 2 years and had my own office.  Most people that came into my office were members of our credit union seeking various types of loans.  Auto and RV dealerships also sent representatives by my office, trying to gain insight into our loan approval process so that they could find a way to make more sells.  This afternoon I was visiting for a few minutes with a salesperson from one of the local RV dealerships.

As we visited I had a sense of deja vu - you know - the sense that this exact scene had been played before.  Most people have deja vu now and then.  I experienced deja vu with increasing regularity, at least several times per week on average.  This time it got stronger and stronger until it was like never before.  Then everything seemed to fall in around me, not that it looked like anything was falling, just felt kind of like that.  It felt as if I had a rapidly narrowing tunnel vision.  And then it seems as if the feeling exploded and I suddenly felt the opposite of deja vu, known as jamais vu.

Jamais vu was definitely a new feeling for me.  I suddenly found myself (in my own office mind you) in an unfamiliar place.  Part of my mind seemed to be racing with explanations: I've been kidnapped and taken somewhere, how did I get here, who is this man talking?  I was very scared.  My logical brain began identifying objects, a door, a window, a computer, a person, a chair, while it seemed the other part of my brain just couldn't put it all together to recognize anything as familiar.  My right arm and shoulder were twitching and I was breathing heavily, as if hyperventilating, I had a strange taste in my mouth, and had a rising sensation in my abdomen.  The feeling began to dissipate.  I was sweating profusely.  

I felt embarrassed.  I was able to recall the entire event from beginning to end, but during the event I was unable to realize what was going on or how I even got there.  During the event I noticed the man in my office talking, but did not comprehend any of what he was saying.  I now began to make sense of the man in my office speaking to me.  He was asking what was wrong, wondering if I had ever had that happen before, was I a diabetic?  I didn't know what to say, so I said, "I think I need a drink of water."  I excused myself and went and got a drink for a minute.  I then returned to my office and continued the visit.  A few days later I called the man and asked him about it.  He said at the very beginning I began to slur my speech and that the event lasted 3 to 5 minutes.  I hadn't noticed the change in my speech or the length of time, it seemed like a mere 10-20 seconds to me.

Later that night my wife and I played cards with my sister and brother-in-law.  I casually mentioned what happened.  I thought it might have been a stroke, but couldn't figure out how I recovered from a stroke so quickly.  My wife wanted me to go see a doctor.  I refused, but agreed to go if it ever happened again.  That wouldn't take long.