That's how I feel today; Tired and drained...
Let me back up and explain because it's been a while since I've felt that way. Things have been going quite a bit better as the new medication takes effect more and more as time goes by. I have more energy, more zest for life. My brain has been a lot clearer in general, even given the fact that there are still good and bad days. The bad days are very manageable and I can live with them. I have periods of up to 5 days that are completely seizure free, not even one of those tiny electric shocks (ES)! Then come a few days where I have maybe 1 ES and up to 3 complex partial seizures (CPS) per day. The CPS, however, are pretty light and only last 30 seconds to 1 minute. I can live with that. Completely seizure free would be the best, of course, but Dr. Vollhardt said that it might not be possible to get me 100% seizure free anymore. Well, I'd be satisfied if it would stay like it's been for the past couple of months. I can live with that. Anything is better than the horror I've lived through for the past year and a half. I even stopped wearing my medical emergency bracelet last week.
I was so burned out and at the end of my rope when I started taking the Topirimat at the beginning of May that I truly thought I couldn't go on. Every morning when I got up from work I wondered how I would make it through that day. Each day seemed like an insurmountable mountain in front of me. I longed to go off somewhere alone for a while and just rest. My work completely over-challenged me and I lived under permanent sensory overload. I didn't want to see or talk to anyone because it was so strenuous. I just wanted to hide somewhere all alone all of the time.
My Epilepsy counselor told me I'd better start thinking about reducing my work hours because I just wasn't going to be able to go on like I was. She also said that driving was legally out of the question, regardless of whether or not my neurologist had officially suspended my driving privileges. Having CPS automatically means suspended driving privileges. Consciousness is affected to some degree during a seizure, how much depending on how strong the seizure. One year seizure free and I can drive again. It just doesn't look like that's going to happen. It looks like my driving days are over. I don't really care anymore. I'm perfectly happy zipping around town on my bike.
I was so happy that I was feeling so much better- until yesterday that is. It hit me out of nowhere, completely unexpected, and for no apparent reason. My brain has been feeling kind of weird since Friday, I admit, but I tried to ignore it and pretend it wasn't true. Yesterday evening my girlfriend and I walked into town for dinner, and everything was going fine despite my brain feeling kind of funny. Conny is used to that and is considerate of it. I was still able to converse with her and we were enjoying ourselves. On the way home I was suddenly hit by a heavy CPS that made me sway on my feet, forcing me to grab a lamp post. Conny turned to look at me and I tried to say something to her, but all that came out was gibberish. I wanted to sit down on the sidewalk, but I didn't want to show weakness and remained standing, holding tightly to that lamppost. As soon as it lightened a little I said we could go on, and I somehow managed to get home with Conny holding me by the arm, making sure I didn't get hit by a car or anything.
The rest of the evening was one long cluster of CPS, so many that I couldn't count them. Many were so strong that I couldn't even stay on my feet. A couple of times I lay down on the living room floor for a while hoping it would stop if I rested for a little bit. It would lighten, I'd get up and go into the kitchen, only to go to the floor again. I stayed on my feet during some of them but then I had no idea what I was doing, standing there with something in my hand but having no idea what to do with it, for example. I kept remembering that Dr. Vollhardt had said that grand mal seizures could no longer be ruled out. I also kept remembering that you don't have any warning anymore before a seizure after you start taking a 2nd medication, and that I could get hit by a grand mal at any moment, without warning, and that I should make sure to stay where it's safe to fall. The seizures kept coming in wave after wave right up to the time I went to bed.
Pure horror...
In the middle of all that it occurred to me that Dr. Vollhardt had told me that I should take my emergency medication after going to the floor 2-3 times, and that I'd already been on the floor way more than 2-3 times. I realized that I should take my emergency medication.
But I didn't...
I didn't have a grand mal seizure either, thank goodness. That would really have messed my life up.
I didn't take it because I do not want all of this to be true! No, no no! The new medication is working! Everything is fine! I'm only imagining this! This isn't happening!
I need to go to the doctor for a prescription this week and he always asks how it's going. I was so happy that I had been able to report that things had been going so much better the last couple of times I went for a prescription, and he was happy too. If I'd taken my emergency medication I would've had to tell him that. I wouldn't have been able to play down what happened yesterday. It makes me feel guilty to tell the doctor when I'm doing bad, as if I were a naughty child. It also makes me feel like I'm not a real man to admit that I'm not doing well. It would have been terrible to have to had told him that yesterday evening was so bad that I'd taken that pill.
So why did that happen? I have a theory: I officially began 3 weeks of vacation at quitting time last Friday. Right away something inside me began to let go, some tension, some drive to keep going that had gotten me through all that suffering before last May. Could the so-called "Feierabend Anfall" principle apply here? That means that a seizure- in this case a whole cluster- comes right after the stress ends. Is this going to burn itself out in a couple of days and go back to being manageable again? Only time will tell. I'm not going to do anything at all today. I'm going to be lazy. Maybe that'll help.
Only time will tell...
