Wednesday, November 23, 2016

Baby I Can't Drive My Car

With apologies to the Beatles, at least for those of you who are old enough to remember them :-)

I've told you before about one of my first seizures while living alone. But it wasn't my very first one. That was much scarier.

When I moved out of my parents' house in 1993, I had a gray 1983 Chevy Cavalier that I was really proud of.
Like this one, only the hood actually closed.
It drove my brother and me from St. Louis to the Seattle area, and drove me back and forth to work a lot. A good car. The kind that you'd expect someone to name; but I never actually thought of doing that. (I probably would have named it Henry. Or Lucius.)

So my dad, the dentist, had recommended a dentist friend of his to look after my teeth, and after a while I decided I'd better go see him. The drive down wasn't bad. Parking in downtown Seattle was unnerving—I wasn't used to all those hills. (St. Louis isn't completely flat. Only mostly.) The dental appointment itself was what you'd expect; funny smells and uncomfortable things in your mouth. But I was used to that. It was the drive back that I didn't like.

Everett, where I was living, is about 25 miles north of Seattle, and you'd expect that the quickest way there would be I-5, which passed about a mile from my apartment and went straight through downtown. But having experienced traffic there, I decided to stay away from it and use State Highway 99, which was quieter. Man was that a good choice.

I must have been about halfway home when all of a sudden I felt the familiar tingling and numbness in my left arm and shoulder. I knew I was going to have a seizure, it was going to be the full-on tonic-clonic, and I couldn't do anything to stop it. And me driving fifty miles an hour down a major state highway.

Why, yes. Yes we are.
The last thing I remember even vaguely was slamming on the brake. I could still do that even though I couldn't move my arms anymore. I didn't have any idea of whether that would help, or what it would do, or even if I was actually just imagining it and not really doing anything. I just knew I needed to try and slow down. And then twitch, jerk, convulse, darkness.

Next thing I knew, I was in Group Health Lynnwood Medical Center. I don't remember much about it. I was fine. Not even a Band-aid. Someone had managed (apparently) to get to my car, stop it, call an ambulance, extricate my wallet and see my medical ID, and get me AND MY CAR NO LESS to the hospital. And I was fine. I couldn't have asked for a more amazing miracle. Or could I?

Once I began feeling better (I guess), I was worried about Henry. Or Lucius. Or whoever. After all, last I remembered I was flying down the highway and then jamming on the brakes. Surely something had happened.

But they said my car was in the parking garage. They even walked me out to it. Henry Lucius The car was completely fine. There was no scratch, no dent, no nothing. I was overjoyed! So who had done this for me? The people had left, they said. They had checked to make sure I'd be all right, and then they had left. I drove home, thankful, thoughtful, tired, scared, relieved.

I don't remember a whole lot of details after that. I knew I couldn't legally drive for a year. (That's a long time, in case you feel inclined to try it.) I checked out bus routes, called my insurance company to let them know the car was being parked for the rest of the year, resolved that walking would do me good. Then relaxed and felt thankful that I wasn't one of the 40 thousand or so who died that year of epilepsy and epilepsy-related accidents.

Most people don't get a miracle. Not like that anyway. I was sad that I didn't get to thank whoever it was that did this for me. I sometimes wonder about them. Who were they? Where were they going? Did they mind rescuing me? Do they ever say, "Hey, remember that guy we pulled out of the car?" I'll probably never get a chance to thank them, but it's not unlikely that I wouldn't be here without them. That's humbling.

Tomorrow is Thanksgiving in the US; I'll be leaving work and going home shortly to enjoy the holiday. As I do, I'll be remembering those of you who have stood by me in my epilepsy the last twenty-eight years, whether I know you or not. Whoever you are, whatever your reason—thank you. Thank you for everything.


Friday, November 18, 2016

Testing Testing Part 1 - EEGs

As I write this first sentence, I'm in the neuro office waiting for my first EEG since changing my meds. For those of you who don't have experience with an EEG, it's basically an electronic recording of your brain activity. A technician pastes 16, or 24, or more wires onto your scalp and hooks you up to a machine that listens for electricity coming into them from your brain. It can be as short as 20 minutes, or as long as 3 days or more. Mine is going to be an hour. 

(Note: For staffing reasons beyond my control, the exam was in fact a "routine" 30-minute EEG.)

The machine looks a bit like an octopus, with all those wires. I unfortunately didn't get a picture of me with the wires on, but I've always thought the EEG machine itself looked cool.

The Machine. Probably without Florence.
Most of the time, you're sitting (in my case, lying) down with your eyes closed. The doctor wants to get a good picture of your resting brain. I always fall asleep. They do need to try a couple of stimulus situations, though. About 1 out of every 30 people with epilepsy (about 3%) are sensitive to bright or flashing lights. So the EEG tech will set up a strobe light right over your face and strobe the light right into your eyes, to see if anything happens. You do get to close your eyes, but the light is only about eight inches from your face so it doesn't seem to make much difference. Then, they'll have you hyperventilate for two minutes. This makes me dizzy and dries out my throat, but doesn't seem to do anything else. Some people have seizures while they're having an EEG. This is very useful to the doctor, I guess; not so much fun to the patient.

My particular EEGs are pretty boring, mostly. Once a year or so, I go into a room, get my scalp measured and marked off with a pencil (which is painful—your scalp wasn't really meant as drawing paper), get wires pasted onto my scalp, lie down on a hospital bed, and then mostly close my eyes and lie there listening to the tech click away with keyboard and mouse. It's a good thing they want you to fall asleep. But they're the best quick view my neuro has into what's going on with my brain, so I deal with it.

Besides, who would miss a chance to get off work to take a nap?

The Epilepsy Foundation of America has (as usual) a really good quickie discussion of an EEG with more information available.

Thursday, November 3, 2016

National Epilepsy Awareness Month

November is National Epilepsy Awareness Month in the United States. The Epilepsy Foundation of America is encouraging people to take part in awareness and fundraising events. I've convinced my workplace to do a fundraiser, and I'm going to be tweeting and Facebooking facts about epilepsy throughout the month.

Epilepsy is one of the most widespread of the "invisible illnesses"; it affects nearly 3 million people in the US, and 50 million or more worldwide. Yet research on epilepsy is drastically and chronically underfunded. Please, if you are in the US and you get a chance, consider getting involved in one of the events sponsored by the local branch of the Epilepsy Foundation. We need you and we'll be glad to have you!