Brain tumors suck. Hi, I'm Patrick btw. This is my cancer blog. My "normal" stuff is over here.
My brain tumor journey started with a full tonic-clonic seizure (aka a “grand mal”), as I already described briefly in my first blog post. In this post, I want to elaborate a little bit on that topic.
I only ever had this one tonic-clonic seizure up to now and boy, am I grateful for that. Let me tell you what I remember about it:
It was in the middle of the night when I woke up because something seemed wrong. I realized that I was thrashing around wildly in my bed. I think I remember that my wife was trying to talk to me, but then I blacked out. I then woke up again, with some strangers around me who asked me what my name is and where I am. I think I answered at least some of the questions correctly, and then they gave me something to put me back to sleep. That’s all I remember myself.
According to my wife, she woke up because of my trashing around. When that stopped, I just lay there with my mouth slightly open, drooling and staring blankly into nothingness. That must’ve scared the bejeezus out of her, I still feel kinda guilty that I gave her such a fright, but of course I know it wasn’t my fault. Anyway, she called an ambulance realizing there was some serious trouble going on. Apparently I then woke up at some point, trying to comfort her that everything was ok, followed by me saying “Ich kann nicht mehr” (roughly translates to “I’m exhausted”, “I can’t go on any more”). That’s the part I honestly don’t remember. Then, the ambulance came and we drove to the university hospital.
This first seizure was the tumor putting pressure on my brain, as far as I know. After the surgery though, I started getting surgery-related seizures. You see, if someone cuts out parts of your brain, this’ll leave some scars, something your brain doesn’t like very much. In my case, because my tumor is in the left frontal lobe, I get focal seizures in my right arm. You can imagine it a little like an obdormition1, only that instead of your arm hanging around doing nothing, you can see and feel it “pulsing”, i.e. contracting uncontrollably.
The first time this happened to me in the hospital post-craniotomy I was quite concerned, because I didn’t know what to do. Now it’s more of a minor nuisance, although everytime it happens (which is about once every three month at the moment), I feel a bit exhausted afterwards. It only lasts for about 10-15 seconds, so it is over very quickly. There really are worse seizures to be had, as many of my fellow brain tumor patients can attest to you I guess. I can’t even imagine how seizures feel where you lose your control of speech or cannot control your legs.
Occasionally, I also get so-called auras, at least I think they’re auras. It’s very hard to say what is an aura or not, because they can be almost anything that feels unusual. For me, when I’m exhausted for example, it sometimes feels like I might not be able to control my right arm any moment. Interestingly, whenever I have a real seizure, I almost never feel it coming. So the auras might just be in my head ;).
I’m taking Levetiracetam as an anti-seizure medication, sold under the brand name “Keppra”. Which is also shorter and easier to pronounce, clever marketers I’d say. I started with 1000mg daily, 500mg in the morning and 500mg in the evening. At the moment I’m taking 2000mg per day, because the seizure kept coming back, although only very rarely, as I already stated above. I’m still in the process of figuring out if upping my dosage might prevent me from having the seizures altogether. It also will someday get me the premium membership at my local pharmacy, I’m pretty sure, because the big pack costs about 700€. It’s all paid for by my health insurance though, I still love to see the faces of the people working there (the pharmacy I mean, not the insurance company). The only time they were even more shocked was back when I bought the first batch of Temodal for about 2000€. Believe me, this stuff is really expensive and I’m very glad for my health insurance right now.
There is this one thing that is most annoying about still occasionally having seizures, apart from it not feeling very good: In Germany, you’re legally required to be seizure-free for one year until you’re allowed to drive a car again. Fortunately, I live in the city and don’t even own a car, but it would be very nice indeed to be able to legally drive a car again, if only to not feel guilty about misusing my wife as my private driver so often. Having to wait for a year still makes sense I think though, I wouldn’t want to kill either myself in a car accident (which would be rather ironic, with the tumor killing me in this way instead of slowly wasting my brain away) or even worse, hurt someone else in a crash because I can’t control the car. I’ll rather walk then, thank you very much.
On the bright side, I cannot attest to any of the dire side-effects that some people report with Keppra, to quote only some of them from drugs.com: tiredness, weakness and (of all things!) suicidal thoughts or attempts (as if having a brain tumor isn’t already enough, they give you a drug that might even make it worse). Me, I’m feeling fine with Keppra, as far as I can judge it. And that’s all I have to tell at the moment about epilepsy, and I hope it’ll stay that way or even get better and I’ll be totally seizure-free at some point.
1 yeah, I totally had to look this one up to impress you. It means a numb limb, e.g. when you slept on your arm and can’t feel it anymore.