Yesterday as I was driving down the interstate, during my commute home.  I suddenly smelled a very strong odor.  It was the smell of something electrical getting very hot - like it was burning.  This is a type of aura that I sometimes had in the past when I was getting close to having seizures.  That type of aura is known as an olfactory hallucination.  (It's a smell that isn't really there.)  The smell was very strong this time.  I was nervous.  I didn't know why I was experiencing this smell - I had been well-hydrated and had been sleeping well too.  

Then the radio quit working.  What a relief!  It wasn't just in my brain, it was actually something electrical getting very hot.  Brought back memories of seizures, but luckily, this was just the real smell.  I guess I'll have to get used to really smelling things now.

It's been a little over 4 weeks since my right medial temporal lobectomy.  I understand everything went well in surgery.  The nurse practitioner called a few days after the surgery and told me that what they removed was not a neoplasm.  I take that to mean that it was not cancerous at all.  She said the neurosurgeon will explain the results in more detail at my follow-up visit.

I follow up with the neurosurgeon next week and am anxious to get back to normal.  I think I underestimated the amount of fatigue I would have.  The headaches have varied, but are getting less frequent and less intense each day.  In fact, I find that I don't take much of the pain medication I was prescribed.  What is generally worse than the headaches is the pain in the jaw on the side the surgery was done.  For some reason it hurts to open my mouth very wide, which makes eating uncomfortable.  Chewing doesn't hurt very much, just the actual opening of the mouth.

At night I have been staying awake until at least 1am and sometimes 3am.  Granted, I am sleeping in a little later than usual in the mornings, but it still is odd that I have to lay in bed for so many hours before getting tired.

My vision is improving.  I still have some double-vision.  It is most noticeable in the lower one-third of my field of vision.  The upper fields are almost unaffected.  The vision is improving each day it seems.  I do find myself being more careful with how I walk, doing so slowly and deliberately to avoid falling.

My sense of smell and taste I seems to have been effected for the worse, but that is something I think I can learn to live with.

Overall I have been very blessed with so many family, friends and wonderful coworkers thinking and praying for me.  I don't seem to have any problems speaking English or Spanish, as I have been bilingual for about half of my life.  I do have some stuttering, and I am wondering if that is because of the Keppra they put me on to prevent seizures.  I had a stuttering problem at times when I was on Keppra for several years, but never had one growing up.  I am beginning to play the piano and violin again.  I don't really notice any deficit with that either.  It is more difficult than usual to play due to double-vision and just not feeling great in general.  Those of you who play a musical instrument know that your playing is not the best when your body is not running at 100%.  I really think I will regain all of my playing abilities back as I heal and practice a little.

Besides being told that they didn't find cancer, the next best news has been no seizures.  This is a big deal since I usually have at least 15 per month.  I have not had a single seizure since surgery!  The first few days after surgery, and a couple of other times, I felt like I may have a seizure coming on in a while, but never did have one.  I'm really hopeful that I can be seizure free again and come off the small amount of Keppra that I am on.  If all goes well I could be working nights and driving again someday.  For now, I just can't wait to get back to work.  I want to feel like I'm doing something productive

Thanks to everyone for you thoughts and prayers!

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.