Here we are again. Those of you who’ve known me a long time will know this is not the first — or worst — time that my epilepsy medications have stopped working. But every time it happens it’s a gigantic pain.
Someone asked me the other day how I know when they’re not working (what makes me go get an EEG after 8 years of successful treatment with a medication). For me, the symptoms look something like this:
- Suddenly realizing in the middle of a conversation that I don’t know what someone is talking about
- Looking at my computer screen/book page and realizing I don’t know what I’ve read
- Reaching for a word and finding it just not there (not a complicated word, but a word like “dog” or “house”)
- Forgetting what I am saying halfway through a sentence
- Forgetting activities, to-dos, promises, responsibilities, even though I’ve written them down and looked at them several times
- Feeling disconnected from life, as if there’s a cotton barrier around me that I can’t quite reach the rest of the world through
That’s what drove me to the doctor, what made her give me an EEG & MRI & do a level check on the Depakote I’ve been taking since 2008. The results:
- The level of Depakote in my blood is not noticeably different than it was a year ago when the drug was working
- The EEG shows multiple “absence” seizures, most of which are a second or less, but the longest of which was nine seconds
- The MRI shows brain abnormalities (but if you know me, you know my brain’s never been normal) that are likely caused by seizures and should resolve if we can eliminate the seizures. These are not tumors or anything else dangerous. They’re just sort of tissue toughening caused by seizure activity.
So, what do they do when this happens? It’s different every time. In 2005, the seizure activity was much worse. I could barely finish a single sentence. But I’d been on the same drug for 21 years, so there was a whole host of drugs they could try. The very first one they switched me to worked great. Until, in 2007, I developed a toxic reaction to it. In 2008, after trying several other drugs, I was put on Depakote, which has been working until now.
So, what now? Since Depakote worked really well and the seizure activity isn’t as extreme as it was in 2005 (and for a number of other medical reasons), the first thing we’ll try is raising my dosage. After a couple of weeks, I’ll have a blood test to see whether taking more of the drug orally has significantly raised the level in my blood. A couple of weeks after that, another EEG. And a month after that, another MRI.
With a little luck, that will fix the problem. If I’m not lucky, it’s wash, rinse, repeat on the drugs, EEG, MRI until we find a cocktail that works. Luckily, in the eight years I’ve been on Depakote, a couple of new medications have been invented, so while Depakote was court of last resort when I first tried it, there are new things to try if raising the dose doesn’t work.
So if I am even more ditzy than usual in the next month or two, that’s why. And with a little luck, I’ll be back to regular-level-ditz sooner rather than later.