Facing Epilepsy: Parents, Doctors, and Caregivers

You might not all know this, but for the past several years I've been working in the healthcare field, in the IT specialty known as medical informatics. About a year and a half ago, I discovered The Health Care Blog, an interesting source of diverse views on health care, health care reform, and the part that IT plays in both.

Fear not though! This will not be a post about health care, or IT. I wanted to share with you one of the first posts I read on the blog: a short story by emergency physician and author Philip Allen Green, titled "Status Epilepticus".

The story made a really deep impression on me when I first read it last year, and I've gone back to it many times since. It really tells the story, I think, of what parents can go through when they have a child with epilepsy, and what a doctor might go through when they're unable to cure, or perhaps even to help, someone with a seizure.

Please read the story. I hope it will give you the same sort of insight it gave me.

To all of my doctors, and to my parents especially: I can't thank you enough for how much you've wanted and tried to help me. I love you all, I really do.

A Brief Vocabulary Lesson

Don't worry, I'll keep it short.

There are a bunch of different kinds of epilepsy, and a bunch of different kinds of seizures. The one most people think of, where you fall down and go into convulsions? Yeah, 40% of people with epilepsy (aka a seizure disorder) don't experience that at all. A bystander might not even be able to tell that someone is having a seizure.

So what kind of seizures do I have? As you might guess from my "Being Alone" post, I do have that big, scary kind of seizure—and it is scary. Historically, this has been called a grand mal seizure (it's French for "big illness"). That doesn't really describe a lot about it, though, so in modern terminology people call it a generalized tonic-clonic seizure. "Generalized" just means it involves the whole brain, and "tonic" and "clonic" (which has the same "o" sound as in "clone") describe the tightening and jerking muscle movements of a convulsion.

But wait, that's not all!

They don't all look like this.

There are also partial seizures, which involve only part of the brain (duh). These can be simple partial seizures, where you're completely conscious and aware of what's going on, or complex partial seizures, where consciousness is "impaired" (which is a polite way of saying that something is happening to you and you're not even aware of it). I'd be totally spooked if that happened to me.

My particular kind of seizures are called partial-onset seizures. So what happens is I start by having a simple partial seizure, with the uncontrollable left-hand and left-arm twitching I mentioned in my very first post. There's also a truly miserable feeling I've never been able to quite describe; it's kind of a mixture of falling, paralysis, dizziness, and lightheadedness. If that seizure lasts long enough, then I will have a generalized seizure on top of that, as the crazy activity on the right-hand side of my brain spreads throughout the whole brain.

There are a lot more different kinds of seizures as well—absence seizures, myoclonic seizures,  atonic seizures (aka drop attacks), and more. I may go into that later, but for now I wanted to give you guys the tools to describe what's happening to me. And a lot of other people as well. Having the right words for something is always the first step on the way to being able to work with it; so now you know!

Seizures: Being Alone

Six years after being diagnosed with epilepsy I finally moved out on my own. I was on my second medication by then—Depakote. It did well for me (except for the required quarterly liver function tests, part of the territory). I was really really excited about being permanently an adult: a bit nervous, especially at being two thousand miles away from family, but really happy at the same time.

And then one day.

You know, I don't really remember what I was doing that day. I do remember I was walking through the living room, and all of a sudden I fell over. My glasses fell off, but I couldn't tell where they were. My neck was curled up against my shoulder—I knew I was biting my tongue but I couldn't feel it. My arm was jerking behind my back in some kind of spastic disco move. My legs were probably twitching and kicking; I don't remember. I do remember praying that I'd lose consciousness. Then it went dark.

I don't know how long I was awake before realizing I was. My first thought was "Is it today?" A bit incoherent, but I knew I didn't even realize what day it was or how long I'd been lying there. After maybe ten minutes I gathered enough strength to turn my head to find my glasses. They were right there beside me, but I couldn't move my arm to reach them. That took another five minutes or so. Eventually I managed to get up, stagger to bed, and fall asleep.

Being alone can be a great experience, liberating and fun, when you're healthy. When you're chronically ill? Not so much. Fortunately it's easier to find support now (online, for example) than it was twenty-plus years ago; still, having a seizure alone is one of the most harrowing experiences I've ever had.

If you know someone has epilepsy, say hi. Ask how they're doing; be friends. It means a lot to us, it really does. And if you have epilepsy yourself? Don't be afraid to talk about it. Don't let it control you. People are good; life is good. Let it be good to you.

Medication Side Effects - Win Some, Lose Some

Yeah right.

Well I wasn't going to post this for a while, but then this morning happened. I got up early and took my meds right at 8:00, as usual. I even marked it down on EpiDiary (my personal favorite epilepsy medication and seizure tracker) so I'd remember. But then life started happening. I got busy, and round about 11 I couldn't remember whether I'd had my morning meds. So I took a pill "just in case".

One of these, in case you were wondering. About life size.

And then remembered I'd already had one. 

Half an hour later, I started getting tired. This was no good, I had stuff to do. But I knew what was coming. Tiredness first, then dizziness. Then the double vision. For maybe an hour or more.

Episodes like these aren't uncommon in people with epilepsy. Our brains can run out of control, and it takes some pretty strong stuff to keep them in line. (A friend of mine takes the same meds I do, for another condition. She complains of being "whacked out" on 450 mg of the stuff. I take 2700 a day.) Fortunately, I take less medication than I used to, and I had some hints from my old neuro what to do. "Protein," he'd said. "It binds to protein." So I chugged a half-liter of a protein drink I keep around the house, and fifteen minutes later I was, if not OK, then at least good enough to go on with.

Side effects are common with anti-seizure medications, even when you're only taking what's prescribed. Before my meds were reduced, this was a daily occurrence. But if you're on the meds, there are usually tricks you can learn to minimize problems. Check with your neuro; check with your pharmacist. (Pharmacists are a great resource—and you usually see them once a month anyway. You might as well make friends.) And for those of you around us, please try and understand we take some pretty powerful stuff, and it can affect us in lots of ways: tiredness; memory problems; problems with balance, coordination, or eyesight; and other problems too. Just keep in mind, it's part of what we have to do to survive.

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The Epilepsy Foundation of Western and Central Pennsylvania has a great page listing a lot of common epilepsy drugs and their side effects. And the main site of the Epilepsy Foundation also has a good discussion of side effects in general. I recommend both.

Facing Epilepsy: In the Beginning

A Saturday, I think, at the end of March 1988. I was a junior in college, at a movie with my girlfriend when we noticed my left arm twitching every few seconds. I was concerned, but when it stopped after a few minutes I just made a note to go to the Student Health Center the next day. We went home, and I fell asleep.

The next thing I remember was my girlfriend putting my coat on. Tying my shoes. Crying. Leading me to a waiting university security squad car. After a few minutes, we were here:

University of Chicago Medical Center

For those of you without epilepsy, I'm not sure you can imagine what it's like to have your body start doing things without your realizing, or wanting it to. To feel like you might be about to totally lose control, at any moment and without warning. And losing consciousness? I'm never quite sure, when things go dark, that they'll come back again. Scary stuff.

Probably the worst thing for me, at the beginning, was not knowing why. They did a CT, and an MRI (which was new back then; they were still "NMRs"). They did a spinal tap. But no definite results, at least not that they told me. I'm sure that was frustrating to my parents. Me? I was just terrified, at least when I wasn't feeling woozy from whatever anti-seizure drugs I was on.

I got better, as they say. No, the seizures haven't stopped. But they've stopped scaring me as much. (I guess practice makes perfect? I've had a fair number by now.) And I know more than I did back then. If knowledge is power, welcome to the epilepsy power zone.

Welcome to me, facing epilepsy.

I want this blog to be a resource for everyone: a source of strength and friendship for those with epilepsy, of support for family and caregivers, of knowledge for everyone. Through my experiences i hope we can see that no one is alone in their struggle with epilepsy, and that everyone has the power to help