Epilepsy Update 1 Feb 2016

I've always been a person with a positive nature and have always tried to make the best of every situation. That's generally a good thing but it also has hidden dangers, like the fact that I often try and make things seem better than they are. Sometimes it's better to be realistic and admit that things just aren't as they should be in order to try and find a solution. 

That's likely why I've seldom been completely honest with my neurologist, telling him that things are going better than they really are. 

For one thing I have, as I've written before, enjoyed near perfect health up to the point where I got Epilepsy and it's extremely embarrassing for me to have to admit that I'm ill and in need of help. 

So I try and play it down... 

Another thing is that I'm afraid my neurologist will suspend my driving privileges if I tell him exactly how badly I'm doing, and that could negatively affect my employment- even thought I haven't driven for a couple of months now anyway due to the fact that I haven't felt safe behind the wheel. The complex partial seizures that I'm experiencing almost every day have become so bad hat they sometimes affect my consciousness pretty drastically, which is grounds for suspending my driver's license. You see, I work completely self-responsibly and am not supervised so my boss hasn't even noticed that I've been using public transportation to reach my outside appointments and do house calls. I will, however, have to officially inform him should my driving privileges be suspended. I have no idea how he would respond to that. Would he fire me? My job requires that I be mobile. A least I've got a stack of past bus tickets to prove that I can do my work without a car if necessary. 

So how did it come to be that my seizures have become so bad? Let me continue My Epilepsy Story and bring you up to date...

I was in great shape after being put on medication in November of 2012, after my last grand mal seizure. I was able to live normally for almost the next two years. That odd feeling in the brain that Epileptics have was always weak and the only seizures I had were two or three very short, very light one second things per day, kind of like a tiny electric shock in my brain. They weren't a problem at all and weren't noticed by anyone around me. Nobody but my girlfriend and my two daughters even knew that I have Epilepsy. Every now and again when the flu was going around that odd feeling in my brain would become a little stronger and the electric shocks would become a little heavier, and maybe I'd have four or five of them a day instead of two or three. That would go on for maybe a week and then things would go right back to normal. That wasn't a problem either. 

All that changed in October of 2014 when that brain feeling began to get quite a bit stronger and those electric shocks became heavier and went up to about ten to twelve per day. Whereas no one around me had even noticed the tiny shocks up till then I suddenly found myself gasping when they hit, they were becoming so strong. 

People began to notice...

Then came a day when that brain feeling was almost unbearable when I woke up. As usual I wanted to tough it out and went to work. I was getting hit by heavy electric shocks over and over again and was in an epileptic daze. I was operating on true grit, as John Wayne would have said. By mid-day I simply wasn't able to go on and went home from work early. I tried to ride my bike home but that wasn't possible. I was having heavy auras over and over again that made it difficult to stay on my feet. I pushed my bike most of the way home. When I finally managed to arrive at home I let down the shades, lay down, and just suffered the rest of the day. My girlfriend took one look at me after she got home from work later and went right upstairs to her rooms, and there she stayed for the rest of the evening. 

It has never been good again since that day...

All that was only about half as bad the next day and I went back to work, but it was torture. It did get a little better in the course of the next few days but it has never been the way it was before.

I went unscheduled to my neurologist the week after that but he was on vacation and I had to see another doctor at the practice. He ran an EEG but it came up all clear. As I've written before the focus of my Epilepsy is too deep in my brain to be seen on an EEG. They'd have to get really lucky and catch one flare up at just the right moment that was strong enough to register, He declared that everything was fine and sent me away. I walked back home in an epileptic daze and being pounded by tiny electric shocks all the way. At some point a light went on in my head and something became clear to me; my first big episode had been in January of 2008. The next big episode had been in December of 2010. The last big episode had been in November of 2012. It was now October of 2014. That explained it all! My grand mal rhythm was every two years minus one month. My brain was trying to have a grand mal seizure but the medication was stopping it. They say every cloud has a silver lining and this was mine: the medication was working. It was preventing a grand mal seizure. I figured everything would be fine again soon.

(On a side note I learned much later that there is no such thing as a seizure rhythm. What I was experiencing were complex partial seizures, or CPS. After changing Neuros I learned that I have Focal Epilepsy with occasional Grand Mal seizures. What I had experienced on the day described was a so-called "Breakthrough seizure". A bad one had gotten through and now the medication wasn't working right anymore and needed to be adjusted. 26 Nov 2016)

It wasn't...

Somehow I managed to make it through to my next scheduled appointment with my regular neurologist, but every day was a struggle. I was having heavier CPS that were lasting longer- along with those electric shocks. Now I must say that my neurologist at that time was not a good doctor. He listened to my story, looked at the results of that EEG that his colleague had done as well as the results of my last blood test, then looked at me with a blank face and asked me about driving (Huh? What does that have to do with it?). I told him that I did take a company car occasionally to make house calls etc, and he said that he should suspend my driver's license. I asked him why he thought that and his answer was, "Well, if you're going to start having grand mal seizures again you shouldn't be driving." I was flabbergasted and reacted with frustration. "In the first place," I said, "I didn't lose consciousness so you can't take away my driving privileges. In the second place it's your job to make sure that I DON'T have any more grand mal seizures!" He didn't have a clue as to what he should do and sent me away,-driver's license still intact. I walked home in an epileptic daze and pounded by those electric shocks.

It has never been the same since that one, terrible day. Each and every day is a struggle with that Epilepsy daze, electric shocks, and heavy CPS that make it difficult to live and work. There are phases where it gets a little better and phases where it gets a lot worse. Sometimes I forget what I'm doing while I'm doing it and forget what I wanted to say while I'm saying it. My girlfriend is a person who loves to converse and sometimes that's just not possible. She is also a person who very often very badly needs to talk about her problems, but that too is just not possible at times, depending on which phase I'm in. That frustrates her greatly. 

In the meantime I have switched neurologists and my new one seems to be good, but he's having a lot of trouble getting my Epilepsy back under control. He has increased my dosage by 100 mg- 50 mg at a time- and distributed it differently over the day. Each time he's upped the dosage my condition has gotten better for a few weeks, then gone back again. He's starting to talk about adding a second Epilepsy medication to the one I'm already taking.

I went to an urologist last October because I was having that well-known problem that so many men over fifty have. She prescribed a medication and I began taking it. Since then my Epilepsy difficulties have increased dramatically. It got so bad that not a single day went by without at least one heavy CPS, often two or three, but I didn't make the connection. Those CPS have gotten so heavy and my consciousness is often very badly affected during them, though I haven't actually lost consciousness yet. I have often been in town on foot during a seizure and crossed the road, realizing afterward that I looked both ways but couldn't process what I was seeing and wouldn't have even realized it if a car had been coming and might have been run over!

So I went unscheduled to my new neurologist about 3 weeks ago and told him how badly it's all gotten, and I took that prostate medication with me just in case. He told me that the medication cannot be taken by people with neurological illnesses and told me to stop taking it. Since then I have had single days that are actually seizure free- except for ten to twelve of those electric shocks, and that is a small improvement. He will take blood and run an EEG at the beginning of April and see how I'm doing generally at that point. He's also going to send me to the clinic for an MRI. At the beginning of May he'll decide how to further react based on the results of all those tests. He'll probably either increase my current medication once again or add a second one to it. 

I admit that I've lost all hope of it ever being as good as it once was...