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My daily seizures are changing now. I guess my neurologist is getting them back under control. The seizures have gotten a lot shorter and a lot weaker. Those tiny electric shocks have gone back to 10-12 per day as well, some of them weak and some strong. The seizures still happen 2-3 times a day but are usually not as strong and only last 5-10 minutes
What's unchanged is that loathsome feeling in my brain. I call it the Epi-brain. It's an epileptic daze. That feeling that is always there and has been for years. It's weaker on some days and stronger on others. It was strong this past week, especially strong on Monday and Tuesday. At the same time my emotions wanted to crash and that old, well-known anxiety was always waiting to pounce on me and take control. I spent the week just trying to ride it out. Trying to survive. I did my best to ignore that feeling and concentrate on my work- though concentration was very, very streneous. I tried to stay calm at all times, remain in control of my emotions. I kept reminding myself to go slow, take one step at a time, not let things get to me. That kept my head just barely above water.
Completely ignoring that feeling is not possible. It's there and won't go away no matter how badly I wish it would. It affects every part of the day. It is possible not to dwell on it however, not to constantly monitor it, not to continuously be conscious of how nasty it feels.
Going slow and staying calm has got to become my way of life.
The last time I was at my neurologist's he told me to take some magnesium and drink an espresso with sugar just as soon as I feel a seizure coming on. He said that maybe what look like seizures are in fact migraines, which can be similar to partial seizures. Migraines are a notorious side effect of Epilepsy and he said they often don't appear as headaches in men. I have been trying that where possible but I don't think it's helping. It's hard to tell when the whole thing is usually over within 10-15 minutes anyway.
All this isn't easy on the people near to an Epileptic. It begins with the fact that no one but a fellow Epileptic can really understand what one goes through. My daughters live far enough away that they don't see the daily struggle but my girlfriend does. She has a lot of difficulty coping with all the effects, like the absent-mindedness and forgetfulness and the fact that it's not always possible for me to listen to her when she needs to talk about her problems or wants to converse. We can't even walk into town together without her having to fear that I'll have a seizure underway and it could be difficult walking back home.
One thing that gets on my nerves about this blog platform is that you can't determine the order in which your posts appear. In other words, you can't arrange them chronologically. This is actually my 3rd post about my Epilepsy but it will appear before the 2nd one- unless I enter it with a false date, that is. I guess maybe I'll just go ahead and do that just in case any fellow epileptics actually do happen to find this blog and read it, hoping to find encouragement, hope, information about Epilepsy, or whatever.
So here I go with my 3rd update:
I've written a couple of times that the focal point of my Epilepsy lies too deep in my brain to be seen on an EEG unless they happen to catch just the right moment, which is difficult when you only have an EEG every 3-4 months or so. You can't stay hooked up to the machine 24/7. Yet if I understand correctly knowing exactly where the focus is can help the neurologist choose the right medications to treat you with. There have been consistent attempts to find mine since November of 2012 and sporadic ones before that ever since January of 2008. All to no avail.
Until last Monday, that is. I went in for my regular check-up first thing in the morning, and I was feeling pretty strange that morning. I assumed it was all a waste of time despite that feeling, that nothing would show up on the EEG and that nothing would ever show up, that my neurologist would go on having to take one shot in the dark after another in an effort to stop my seizures and that I would continue having to live with daily seizures because he'd never be able to find a solution. Plus you have this sinking feeling that you might be making all this up since nobody can find anything concrete.
Still, I obediently lay down on the couch and let the pretty lady hook me up. And lo and behold, I had a seizure while the EEG was running! For the first time! I still assumed it wouldn't show up because it was a short seizure, and not very strong, but it did!
So I now know that the focal point of my Epilepsy is in the right temporal lobe of my brain. The first thing my neurologist did was to prescribe a 2nd medication to be taken along with the Lamotrigine I've been taking since 2012. The medication is called Topiramat. Epilepsy medications are so rough that they have to be introduced slowly over a period of weeks and your brain is really screwed up the whole time, and it's no different with this one. I only have to go two steps so I should be used to the new med by the end of May at the latest. Till then I just have to put up with dizzy spells and a brain that doesn't work at all. Slow and easy. Ride it out. I can tell you that I haven't had even one of those little electric shocks in my brain for like two days now and that hasn't happened for a couple of years. If that's a foretaste of things to come maybe I will become completely seizure-free for a while after all. That would be really nice.
On a side note: Dr. Vollhardt has come to the conclusion that what I've been calling my Epi-brain, that epileptic daze, is likely migraines. I've written before that migraines are like one of the most common side-effects of Epilepsy. He says that migraines often don't appear as headaches in men, but rather in the kind of daze that I describe being in so much of the time. Topirimat is not only an anti-convulsant, but is good for migraines as well and that's why he prescribed that medication.
Imagine being able to live like a normal human being again! Being able to make plans! Imagine walking into the kitchen and remembering why! Being able to ride off on your bike on your day off without having to fear that your brain will suddenly turn into a bowl of oatmeal 30 km away from home...
Dr. Vollhardt scared me a little. He said that if we don't get the seizures stopped soon they will continue to get stronger and even more frequent and that I'll begin having grand mal seizures again at some point. Not only that, but grand mal seizures are possible during the 4 weeks in which the new medication is being introduced. So he gave me an emergency medication which I am to take if I feel one coming on. More specifically, if I'm having CPS bad enough to drive me to the ground I'm to take it after going down the second time, at the latest.
At the same time I've registered for an Epilepsy schooling that's taking place in June. You learn more about the illness and how to cope with it in daily life. It's called MOSES.
