Saturday, April 28, 2012

#HAWMC - My first seizure

Today's #HAWMC prompt: "Write a post about the first time you did something. What is it? What was it like? What did you learn from it?" My first seizure. Oh, this one is a doozy of a tale. For one, it's embarrassing... because it was my own damn fault. I was taking the medication Neurontin (gabapentin), and I knew that stopping this medication too quickly could cause seizures. But one of those crazy situations developed where, despite all my (*ahem*) good planning, and I found myself caught short.

What had happened was my doctor had told me to increase my dosage of Neurontin, and he would send a new prescription to my pharmacy so that I would have enough pills for the rest of the month. That sounded like a good plan. If it would increase my pain control (which was highly unmanaged at the time), it was worth trying. So I checked in with my pharmacy a few hours after my appointment, but they said they hadn't received anything yet. They told me they would all my doctor and to check back in a couple of days. Satisfied that all would be well, I went home.

I called a few days later and still no word, but I wasn't worried. I continued on my increased dose, even though this meant draining my supply faster than normal. I was in pain. The Neurontin seemed to be helping. I didn't want to slip back into more pain, so I had faith that this SNAFU would clear itself up in time. Doctors and pharmacists are very busy people. They have lives like everyone else. Things come up. This was no big deal. I would be fine.

But then I was getting into week three, and still no word. Now I was really digging into a dwindling supply of Neurontin. I looked at the remaining pills and knew I would have to start the ramp down process. I was calling the pharmacy and my doctors office and somehow, I kept falling between the cracks. I measured out the pills I had left, and started taking less and less---stretching my supply out as best I could---until I would be at zero pills or at my next doctor's appointment. I cut the noon dose first, then halved the evening dose, then tapered the morning dose, then down to one pill a day, until nothing. It was stressful, but everythign seemed to be working out.

Until one night, when I got an awful migraine. Neurontin helps with my migraines, and since I was no longer taking it, this one was a whopper. I did all my in-home health care that I could; ice packs, darkness, quiet, Advil... It wasn't making the migraine go away, but it was tolerable enough if I didn't do anything. It was summertime, and although the air conditioning was lovely, the sound of the machinery running was not worth the cool. So I was sitting outside in my garden shack (to keep the street light out) trying to ride it out. I got a craving for some caffeine, so I walked inside to get a soda.

As I crossed the concrete terrace to the back door of my house, I felt very strange... as if I was viewing myself from outside myself, yet I could also see my way to the back door. I was woozy, but I thought that was just the migraine. I had a strange metallic taste in the back of my mouth like copper or brass, but I wrote that off too as I often experience strange smells and tastes (or a complete lack of smell or taste) with some of my migraines. No big deal. Nothing to be alarmed about. I opened the door, went to the kitchen and poured myself a glass of Coca-Cola.

I took one sip and thought to myself, "Wow, a coke sounded good, but man it did not taste good. Gods, I hope I don't throw up from this. That would be obnoxious... Hey... I feel funny. I should probably set this glass down."

Suddenly, everything changed. I remember darkness engulfing me---like falling asleep---and then the next thing I know I'm waking up to the sound of what seemed like drums. I listened a little closer and thought, "No, that sounds like someone banging on our floor! Who the hell is stomping their feet that loud? My roommate is asleep... Oh, wait... that's ME! I'm having a seizure and my flopping around is banging on the kitchen floor. Oh, crap."

Finally I was able to pop back into my body, like snapping fully awake all of the sudden. And for some reason, even though I was lying on the floor, I looked up and directly behind me, and there was my cat, sitting and watching with a look on her face like, "What the eff just happened to you?!? Sighing, I climbed to my feet to assess the damage.

Luckily, I'd managed to set the glass down, spilling the contents, but at least it was on the counter and not the floor. I cleaned that up and put the soda away. Then I decided I still wasn't feeling too well, so I should probably go lie down. I figured my bedroom was too far away at this point, so the couch would serve just fine. There were pillows and blanks there. All would be good.

I took two steps towards the living room, and on the third step I dropped. This time I didn't hear anything. I was completely blacked out. It, too, passed, and I snapped awake again. This time was terrifying. When I opened my eyes, I was staring at the underside of our dining room table. In my seizure, I had managed to flop my way beneath the table. Now I was scared. When I was in my 20s, I heard of a friend of a friend who had died very young as a result of his seizures. He'd fallen and hit his head on the bathroom counter and bled to death. I was underneath my dining room table. How I didn't hit on the way down was amazing to me.

Now I figured it was probably a better idea just to crawl to the couch. Walking was apparently no longer a safe activity. My cat was still watching me like I was a total weirdo, so I gave her a few reassuring pets and I moved on my hands and knees to the couch---only to realize that the coffee table we have is metal and glass, quite sharp and strong (to which my shins, and their multiple violent bruises, could attest). I looked at the couch. I looked at the coffee table.

I looked at the couch again, with its soft, fluffy, cloud-like pillows...

I looked at the coffee table with its cruel, sharp, sword-like edges...

I looked back at the table I had just crawled out from...

I grabbed a pillow and a blanket,
And fell asleep on the floor.

Never again.

Since then I have been much more careful about my medication, giving my doctors at least a week (5 business days) to complete a refill request, even if they only request 2. I have one of those gigantic pill organizers (four slots for each day of the week) to help me keep track of my pill supply, and give me ample warning for when I need to call in for refills. It's been about a year now, and the practices I have put into place have seemed to work. (I also never increase my medication without getting the new supply first. I trust my doctor.. but he's human, too.)

My first seizures, and hopefully my last!

1 comment:

  1. I get so angry hearing this story. It is just wrong....WRONG. Three weeks and no response.... WRONG. Our system is truly broken here and I am not so sure it can be fixed that quickly anymore. All of these types of stories just convince me more and more that we must be strong and advocate like crazy for ourselves. Threaten if we must! This was a dangerous thing for both your doc and the pharmacist to let slip through the cracks. I mean we are talking your life here.