Tag: seizures

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Epilepsy Awareness Month, Day 11: Par for the course

I had originally written the title as “Just another day”, but I think it’s important to acknowledge that epilepsy awareness is pretty dang significant. It’s like Veterans’ Day or Black History Month or any unit of time that deserves a title with capital letters. People who have epilepsy shouldn’t be marginalized or forgotten or ignored. We’re special… maybe not in a good way, but still special.

I thought about “just another day” because it’s also a way of life for us, something that we deal with every day. Something that I deal with every day. And twice a day when I take my medications, too. (I’d say “morning” and “night”, but as long as I take them at least six hours apart, I’m happy. And for the record, a lot of people don’t have that luxury.)

It just seemed to resonate today because I’m having flashbacks to about 18 years ago. That was a time when my seizures were uncontrolled. Infrequent, but still uncontrolled. Every once in a while, I’d have a blackout. No triggers that caused them, no sensation that it was about to happen. I’d just walk into the kitchen and then I was walking out with a plate of eggs and toast for breakfast. Or watch a Vikings game and then it was ten minutes further into the game and the scoreless tie was 7-0. Or I’d be doing something unimportant and then I was in the middle of a conversation with my mother and only stopped talking because I couldn’t remember the word “chart”. I could think of the lines going up and down and side to side, but not the word. And that was par for the course. I got used to them.

But it’s not like we sat back and let it happen. I was “medication hopping” for a while. We tried a variety of different combinations and doses of medications back around 2000-01. I don’t remember all of them, though I recall taking Trileptal and the doc eventually increased it to a toxic dosage. He thought it would be okay because “I was a big guy”, but the seizures kept happening. So we tried another. And another.

Thankfully, after a stay in the epilepsy ward of United Hospital, the doctors found the right combination. (They glued a bunch of electrodes to my head to find where the excess electrical activity was, then picked medications to address that.) And for fifteen years, that became par for the course.

And then it wasn’t anymore. My body started getting acclimated to those medications and I had to try something else. And I was scared. There was some combination in the early 2000s that really messed with my head. My long-term memory suffered. A lot. And so I was scared. I was about to try a new kind of medication and I didn’t know what that would do to me. Would I forget more things from my past? Would my behavior change? Would I still be… me? Thankfully, Teresa was there to comfort me that night because I did a lot of crying. Because I was scared.

I’m not scared now. I’ve done some more medication hopping since last year, but to no avail. Well, not complete avail. Certainly not “fifteen years with no seizures” avail. But really, not even “I can tolerate this level of seizures in the long term” avail. I’ve got an appointment scheduled with my doctor at Minnesota Epilepsy Group at the end of the month and we’ll talk about a different type of treatment. Maybe a different dosage of what I’m taking, but probably a different medication altogether. And I’m not crying this time. I didn’t any of the other times we’ve made medication changes since last year, either. Because I’m still me, I’m still functional and I’m still able to talk about having epilepsy and seizures. I was afraid of starting medication hopping all over again, but now? Now it’s par for the course.

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Epilepsy Awareness Month, Day 2: What are my seizures like?

When you hear “epileptic seizure”, what’s the first thing that pops into your mind? For a lot of people, it’s an image of someone losing consciousness, falling to the floor and thrashing around violently. It’s understandable. But that’s only one kind of seizure. What many people don’t realize is that there are over 40 different types.

This morning, I brought the dogs outside for a quick walk before work. I usually let Sophie do her business, bring her back inside, then Berkley and I go back out for a longer walk. My head felt a little weird when we left the house the first time, but it wasn’t until Berkley and I headed down the block that stuff definitely started happening.

I think the most unusual part is that in the past, when I’ve had seizures and strange things popped into my head like this, they were there and then gone. “Now you see me, now you don’t!” Whatever it was that I was thinking… poof! Don’t need to worry about that thought process ever again.

But this one image during our walk stayed. I was able to cling to it, remember it, and I kept thinking about it until we got home. I had recently started keeping a seizure journal on my phone just to get an idea of how often they’ve been happening recently, but I was also including other details: what happened, how long it lasted, how it felt, etc. The fact that I was able to remember that image, that thought process from the walk… I wanted to jot down some notes about my seizure as soon as we got back.

So this happened:

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Seizures and bonus features

I was seizure-free for about 15 years. Now I’m definitely not anymore.

What’s strange is that even though I’m having them more frequently than in the past, they’ve been small ones. Simple partial seizures. I’ll see some random image in my head or be unable to put words together in a sentence because they get all scrambled up in my brain. Sometimes I just feel a surge that’s kinda like blood rushing into your ears. All very hard to explain, but all very minor compared to blackouts or full-blown grand mal seizures. In that sense, I’m extremely lucky.

After so many years, I finally needed to change my medication back in October, so the doctor and I decided to increase the dosage of one and leave the other. That hasn’t solved the problem: I had two more seizures over the weekend. Only the second one was noticeable because I was having a conversation and then all of the words kinda swirled away. Well, not all of the words—I was still able to sit there swearing under my breath.

So now it’s time for another change, but instead of only adjusting what I’m already taking, the doctor is prescribing Vimpat. I’d never heard of it before my last appointment, but… well, if the doc thinks it’ll work, I’m hoping he’s right. The part that’s a little bit concerning is that before starting this medication, I needed to get an EKG. (Regardless of what you may have heard from women in any of my prior relationships, I do in fact have a heart.)

I had the EKG done this morning and the doctor signed off on it, but the results showed an abnormality. No one elaborated, just said that I needed to make an appointment to come in later this week. Which thankfully means I’m probably not gonna drop dead from heart failure in the next few days.

More seizures and now possibly heart problems. But instead of panicking (which seems like a reasonable option at this point), I still feel very lucky. Things could be much worse. For one thing, I could drop dead from heart failure NOW! … Or maybe NOW! … How about NOW! Nope, still alive and still feeling very lucky.

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Day 9: What you can do during a seizure

I don’t remember where I saw the original videos, but they were along the lines of Jimmy Kimmel’s “Mean Tweets” segments—people responding to tweets that… well, the tweets exhibited a distinct level of ignorance. Ignorance may be bliss, but it can be bad for other people who need help. Awareness is good. Awareness means learning what to do like in the video below:

Stay safe and keep people who are having seizures safe, too.

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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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What are you most proud of?

Someone once asked me in a job interview that question: “What are you most proud of?” It was surprisingly one of the most difficult questions anyone’s ever asked me. Not because I don’t have things in my life to be proud of, but because of how few I actually remember.

I imagine it’s somehow related to my having epilepsy. The most likely cause—my own theory and what I usually tell other people—is that I did a lot of medication-hopping during the early 2000’s. My body was becoming acclimated to dilantin, which I started taking in 1991, and I’d been having minor seizures for a few years that escalated to blackouts that would last a couple minutes.

We needed to find a replacement since the older stuff wasn’t working well enough anymore, so we tried a variety of different drugs and different combinations. At one point, the doctor increased the dosage of one medication (I think it was Trileptal) to toxic levels, but thought it would be okay since I was “a big guy.” Nothing worked. I was still having seizures every two months or so.

After having a bunch of wires glued to my head for a week and a half in the epilepsy ward at United Hospital in St. Paul, the doctors found the area in my brain that was the source of the overactivity (flare-ups of overactivity that spread to other areas of the brain is what was causing the seizures) and found a pair of medications at dosages that have kept me seizure-free for almost 12 years.

But the point of this story isn’t “Yay, no more seizures!” It’s “I don’t remember a lot of stuff before medication-hopping!”

I was chatting with someone online about this once and she had no idea how frustrating it gets. I tried to explain that I don’t remember a lot from high school and college. People will tell me stories about things we did together and I’d have to smile and nod because it’s a complete blank. I kept a journal for a while when I was younger and reading it is like reading someone else’s autobiography.

She insisted that a lot of people forget things from when they were younger, but it’s not the same. Most people would remember standing on top of a mountain and looking off into the distance when you’ve been hiking in New Mexico for ten days. Three times. (I vaguely remember part of the second trek because there were dark clouds passing below us and one adult in our group was talking on his cell phone.)

I’ve been scuba diving in the Florida Keys for a week or so and remember that our guide gave me the nickname “Indy” (I was standing next to a kid wearing an Indiana Jones t-shirt) and he had one of those safari-style hats with a strap under his chin so he could wear it while we were underwater. That’s pretty much it. My dad was my diving buddy and has plenty of stories to share about what we did. I smile and nod. That’s all I can do.

When the interviewer asked me what I’m most proud of, I told her it was earning my Eagle award in Boy Scouts. It’s an easy default answer, but I don’t remember it. I don’t remember my high school graduation or getting my degree from Kenyon. I vaguely remember the graduation ceremony from law school, but that could be in part because the featured speaker was putting people to sleep. Literally. People were falling asleep while he was talking about “justice” and “rule of law”. That’s all I remember, but that’s one thing I don’t blame my brain for—a majority of the audience was completely zoned out.

There are plenty of things I can recall since then, but I’m not sure whether they fill me up with a sense of pride. That’s not to say they haven’t been significant:

  • Being on TV.
  • Throwing up on TV.
  • Various encounters with people who recognized me from TV.
  • Auditioning at the local community theater for the first time and getting the lead role.
  • Celebrating after scoring my first goal in an adult soccer league. I played defense, so it took me two years. (I don’t remember the goal itself, just celebrating.)
  • Screwing a video camera down onto a tripod, finding out it wouldn’t sit flat and I didn’t have time to adjust it, so I filmed my older brother’s wedding at a slight angle.
  • My graduation ceremony from Augsburg, even though I wasn’t actually done for another few months. (My final MBA course ended in December, but graduation ceremonies were only in the summer.)

So the question remains: What am I most proud of? Or rather, what can I remember that I should be most proud of? Unfortunately, my answer is still that I’m just not sure. But who knows? Maybe someone will read this, think of a good story about my past, tell me about it and I can start using that as my default answer instead.