Tag: epilepsy

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Day 6: Describe your seizures

This question is one I know people can relate to: “You have epilepsy, what are your seizures like?”

You might as well be asking a woman, “You’ve given birth, what did it feel like?”

The problem is that in some cases, you don’t have the luxury of being able to roll your eyes and walk quickly in the other direction. In some cases, you have to try to describe the seizures to your doctor so he or she can recommend treatment.

“Well, my head feels a little tingly, I get a mild sense of vertigo, there’s a rush of energy in my head…”

“Vertigo?”

Words like that are all it takes for a doctor to wonder if it’s safe for you to drive and you may have to try a variety of explanations to convince them that everything is fine.

I was talking to a nurse this morning about changing my medication schedule and I told her about a seizure I had last week. I was eating at Culver’s with my mother and saw a t-shirt hanging on the wall. When I looked at it, the text was describing some kind of epileptic seizure. I wasn’t sure if it was the kind I was having at that moment, but some kind of seizure.

Thirty seconds later, I looked back at the t-shirt and it said FARMERS ROCK!

I don’t know if that description will affect what I’m taking for medication, but if nothing else, I’m sure telling the nurse about the t-shirt was enlightening and a lot easier than explaining the joys of childbirth.

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Day 5: Not broken

I was driving home recently and listening to music on my phone. I have it on shuffle so I can listen to a variety of tunes that stretch from Billy Joel to Marilyn Manson, from Enigma to Nickelback. (That’s right, I listen to Nickelback. If you don’t like it, tough noogies.) As I was turning a corner, I had a brief seizure—slightly more than a picture this time—and what I saw in my head was a phoenix rising up and spreading its flaming wings. Same weird surge in my head, but this may be the first time I could tell what the thing was that just flashed through my brain.

Then a song started playing on my phone: “Broken”, by Seether and Amy Lee.

When it hit the chorus, I almost started crying. “I’m broken…”

Thankfully, that thought didn’t get stuck in my head because I really am in one piece. It’s a really odd-shaped piece, but one piece nonetheless. The term “square peg in a round hole” refers to someone who doesn’t fit the norm. In this case, “normal people” are round pegs and “people with epilepsy” are… well, we’re not. We’re not round, we may not even be square, but we’re definitely not broken. Not even if we listen to Nickelback.

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Epilepsy Awareness Month, Day 4

This is a slightly shameful moment for me, but hopefully, other people can learn from my example. (Hopefully, they don’t need to learn it, but if they do…)

Once I started having those little seizures—once my streak of fifteen years was over—I had a brief thought flash through my head: “Now I’m one of those people.” Not cool.

Aside from the fact that you shouldn’t lump people into categories instead of acknowledging them as individuals, there should be no “I” and “them” when it comes to epilepsy. We all have it. No “I” and “them”: it’s “we” and “us”. Something I need to keep in mind going forward.

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Epilepsy Awareness Month, Day 3

Unfortunately, my streak of fifteen years seizure-free ended earlier this year. I started having small seizures in college that were misdiagnosed as icepick migraine headaches, which meant I didn’t receive treatment for epilepsy until I was having blackouts a year after graduation.

On July 9th, I had three seizures that were smaller versions of the ones in college. (I’m pretty sure these weren’t icepick migraines, either.) So now the doctor and I are making adjustments to the medications I’ve been taking for a decade and a half, which makes sense. Over time, our bodies get acclimated to the treatment and it doesn’t work as well. It’s the same reason why I started having seizures in college: I started taking Dilantin in 9th grade and its effectiveness decreased through high school and college. The plan this time was to increase the dosage of one (Lamictal) and maintain the other (Depakote). The plan is already not working.

I imagine this is a situation a lot of other people with epilepsy have gone through: a change in medication that should have worked—it was a great plan on paper—and it made the problem worse. The seizures haven’t been as strong, but they’ve been much more frequent. Every few days instead of every few months. Which raises the best question in the world (even better than “Does this make me look fat?”): What now?

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Epilepsy Awareness Month, Day 2

November is NaNoWriMo (National Novel Writing Month). I’d like to be consistent and focused enough to write 50,000 words in here during the next couple weeks, but I’m aiming for at least something each day. If I can’t, I can’t, but even Day 2 is more than the last year and a half, so I think I’m already doing a great job.

I was officially diagnosed with epilepsy in 2000 and we found a good medication combination to treat them by the beginning of 2002. I’d been having blackouts every few months (during those times, I’d function relatively normally—I even told my mother how to recognize if I was having a blackout while having one). Over fifteen years without seizures has been a true blessing, one that only some people with epilepsy receive. Some find medications that reduce their seizures to two or three a day and that’s as good as it gets. I sometimes take my situation for granted, but I should always remember how fortunate I’ve been that my epilepsy has been controlled and it’s not creating limits for me. I can drive, I can travel, I can run errands on my own. Many, many things that are simple and average and completely normal, yet also blessings.

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Epilepsy Awareness Month, Day 1

There is plenty that I can write about this topic, but I wanted to start out by making sure I had changed the name of the category “Head Case” to “Epilepsy.” It was kind of a cute pun when I thought of it—a clever play on words, hee hee hee—but epilepsy isn’t a joke. It’s a condition that one in 26 people have, which is why I posted a link to the website below. Plus if you take the time to watch the video, you might see someone familiar. And you might see me in it, too.

onein26.org