Friday, August 25, 2006

Normal

My husband has a seizure disorder. A "normal" seizure for him is what's called a Complex Partial Seizure, and generally consists of him spacing out for a minute, curling his hands in and making an odd chewing noise. After the seizure he'll have short-term memory loss for up to an hour. We've been through numerous medication adjustments, but since I started keeping track of the seizures last November he's been having them at least four times a month. He never remembers the seizure afterwards, so he may be having more that I'm not seeing.

On June 2, he had his first Tonic-Clonic Seizure (also referred to as a Grand Mal). This happened at 5am, when I woke to the sound of jingling car keys and his voice repeating the same phrase over and over. The convulsions started soon afterward. I called 911, got dressed, and woke my daughter up. If I had gone to the the B-List Bloggers Convention like I wanted to, she would have been handling it alone.

As terrifying as the seizure itself was to watch, the period immediately afterward scared me even more. He constantly wanted to get out of bed, or pull his IV out, and I was always the person to stop him. He didn't know who I was, but he knew I was the "enemy", and would give me a look of complete and utter disgust whenever he glanced my way. When he did start talking, he made no sense whatsoever. He would string a group of random words together as if it were a sentence. I'd lived all this before, after the initial head injury, and was afraid the seizure had caused a new injury. The last time it took eight months of therapy for him to even remotely resemble "normal", and I didn't know if I could handle going through all that again.

As it turns out, this was the "postictal" period, which is a period of confusion immediately following a tonic-clonic seizure. There was no new injury, and by afternoon he knew my name. When night fell and he still wasn't saying anything that made sense, they admitted him for the night. By the next morning you could hold a conversation with him, although he'd frequently repeat things, and by afternoon the doctors let him come home. They adjusted the medication again, and I went out and bought two books on seizure disorders. We kept him supervised for the first few weeks, then gradually started leaving him home alone for progressively longer periods. Once the MedicAlert necklace came in the mail, I let him start walking the dog again on his own, although now he took his cellphone with him. Life went on.

Because small seizures often preceed large seizures, we watched him carefully whenever he had one of his usual small seizures. We were given a prescription of Diastat, which is a Valium injection that can be used to stop a seizure in progress, or to prevent a seizure that seems imminent. Diastat is a rectal injection, so we decided that I would be the only one to administer it (anyone else would call 911).

The second Grand Mal seizure happened three states away, where he was spending the weekend at a racetrack with some friends. By the time I arrived at the hospital 5 hours after the seizure, he already knew who I was and could talk normally, which was a giant improvement over the last time, so we checked him out against medical advice and drove home. The doctor wanted to keep him overnight for observation, saying he could have another seizure on the way home, but my response was, "Yes, but that won't change tomorrow, and we have to drive home eventually."

He improved so quickly after the second seizure that it gave me a false sense of security. A lot of people live with epilepsy. Obviously the first seizure was not an isolated incident, as I wanted to believe, so we'd just have to learn to live with it. Other people do. There was no way we could do 24 hour supervision after every seizure if these were going to happen regularly, so we'd just have to accept that eventually he'd have a Grand Mal when he was alone, and he'd sleep it off afterwards. We still watched him after the small seizures, but for a few hours, instead of a few days. We'd gotten used to the small seizures, and eventually the big ones would become "normal" too.

In the weeks after the first seizure, our daughter provided most of the supervision when I had to work. She didn't want to do it any more than I wanted her to, but we didn't have alot of options; My hours are flexible at work, but that doesn't mean I can just stop going. I knew all along there was the possibility he'd have a Grand Mal when she was alone with him, but I hoped it wouldn't happen. Tuesday, it did.

She came downstairs to find him acting erractically, and it didn't take her long to figure out that this wasn't a regular seizure. I was at work twenty minutes away, but fortunately my neighbor was home, and came over and stayed with them. My neighbor has a brother who has had seizures since childhood, so she knew what to do. The actual convulsions were about 3-4 minutes (they tell you to call 911 if the convulsions last longer than 5 minutes), but the errectic behavior leading up to the convulsions was at least fifteen minutes long. It was horribly, horribly traumatic for a 15-year-old to watch her father go through. By the time I got there it was over, although I ended up giving him the Diastat anyway because he started jerking his neck, which we figured was either an attempt to get up off the floor or the start of another seizure, and we didn't want to take chances.

This time, he didn't come out of the postictal period so soon. In the first three days after the Grand Mal, he had at least four small seizures, and the symptoms seem to have changed. He no longer makes the "chewing" noise, and instead repeats a phrase (or what in his mind is a phrase...Often it doesn't make sense) over and over. The most recent seizure, last night, was a particularly scary incident in the car involving a lighter and as many cigarettes as he could light before I could get the lighter away from him (I was driving).

I don't see how this will ever be "normal".

Posted by The Gradual Gardener :: 7:30 PM :: 14 Comments:

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