Tag: epilepsy

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Day 15: Epilepsy on camera

Having epilepsy has made my life more difficult at times, but not unbearable. It didn’t stop me from going through all of the interviews, all of the tests and all of the paperwork to end up being on Beauty and the Geek back in 2005.

For making the final decision about who to put in front of the cameras, they flew a bunch of potential participants to L.A. and locked us in our hotel rooms. During that time, along with interviews with producers and doctors testing me for cooties, I got a visit from a psychiatrist.

One of the forms I sent them during an earlier part of the process was a big “YES or NO” test. “Are you single? Have you been in an adult film? Do you have cooties?” And so on. She wanted to ask me about all of the YES answers on my sheet and there was one that stuck out.

(You’ll have to forgive me for not remembering the exact wording, but things get fuzzy after close to 13 years.) The question was along the lines of “Have you ever experienced something odd or unusual?” You know, like seeing aliens or Bigfoot or the new Godzilla movie in the theater.

She asked me why I checked yes and I couldn’t remember. I had filled it out a few months prior, so… “Well, I mean, we all have different experiences, we all experience the world in different ways, right?” I felt a little ridiculous, but she was satisfied. We went through the rest of the interview without any problems.

It wasn’t until maybe an hour after she left that it occurred to me: “Experiencing unusual things… oh yeah, seizures.”

(In case you’re wondering, they were aware of my having epilepsy. I brought my medication and I was taking it twice a day on my usual schedule, so no seizures. Unfortunately, there was vomiting later in the season, but that wasn’t epilepsy-related.)

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Day 13: Epilepsy =/= My life sucks

I was thinking about the posts from the last couple days and they had a pretty negative tone. Yes, having epilepsy is unfortunate and I’d be thrilled if there was an effective cure that would make it go away, but at this point? I’m still doing okay. I can still flourish. Epilepsy is an inconvenience. A big inconvenience, but an inconvenience nonetheless. And if the life of everyone who has epilepsy sucked, why would so many people be smiling in this picture?

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Day 12: Problem solved!

I remember when I started taking dilantin in high school, I called them my “stupid pills” because they made it harder to concentrate and focus. It hurt my schoolwork and it hurt my grades. It also prevented my having more seizures, so it was a mixed blessing.

Flash forward to 2000 when I was having blackouts and starting to bounce from medication to medication, searching for something that would solve the problem instead of limiting my seizures to every two months or so. One drug stopped them, a variety didn’t… I’m pretty sure one did some permanent damage to my long-term memory… and some people have surgery and go through other treatments to prevent seizures from occurring, essentially searching for a “cure” for epilepsy.

How does that affect the rest of the brain? My recent EEG showed excess activity in one area, yet the treatment inevitably impacts everything. And there’s no baseline for comparison: where would I be without epilepsy? Without all of the medications? I have no idea and it doesn’t really matter. We’re in the place and time that we’re in with our current circumstances. We have epilepsy and we make do. We survive and we thrive. We are. And that is enough.

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Day 10: onein26.org

I like going back to the website once in a while to see what’s been added to the wall recently. Some are pictures with first names (I had forgotten until I saw her picture there that my cousin has epilepsy); some are comments about how brave they think people with epilepsy are, how it doesn’t limit their lifestyles… some comments aren’t as pleasant.

When I first looked at the page on November 1st, I thought, “Why would you put something on here that’s not uplifting? This is supposed to be a positive, unifying website that shows how strong we are, how epilepsy doesn’t keep us down!” Then I remembered that those negative stories come from people who have epilepsy, too. Sometimes it does limit their lifestyles. A lot. And we shouldn’t disregard or ignore them, especially during Epilepsy Awareness Month. In a lot of cases, there’s nothing that can be done. They’ve tried different kinds of medications, surgeries and treatments, but nothing works. It’s part of who they are and it sucks.

I can only relate a little bit—“I am one”—and I wish I could make things better. I wish all of them could be better. (If someone who’s not doing well is reading this, I wish you could be better, too.) If it helps at all, I can promise you’re not being disregarded by at least one person out here. Take care, everyone.

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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 7: Doctor’s orders

First off, I’d like to discourage people with epilepsy from ignoring doctor’s orders and self-medicating. It’s a bad idea. (I did it anyway.)

In my case, it wasn’t a big deal—at my last appointment, the doctor told me to increase my daily dosage of lamotrigine (Lamictal) by a certain amount each week. I got to the final week and started having problems, so I went back to the prior week’s dosage before talking to the doctor again and it’s gotten better.

During the course of the last few weeks, treatments have ranged from “only increase lamotrigine” to “also stop depakote and start taking vimpat” to “Vertigo? Wanna have surgery?” All because I started having small seizures this year that happened three months apart.

It can be difficult to describe “This is what my seizures are like” to a doctor. Hopefully, you can explain the symptoms well enough that they’ll understand the problem and find a treatment that will work extremely well. If you decide to go another route… don’t let epilepsy turn your life into a “Choose Your Own Adventure” book:

Listen to doctor, turn to page 16.
Ignore doctor and take your own drugs, turn to page 33.
Page 33: Bad things happen and you end up in the hospital having more seizures.

The one reeeeeeeally important thing about good doctors is that they listen. They accept feedback. None of mine have ever said, “This is what you’ll do because I said so and I went to medical school!” And so we listen to each other as we consider options for treatment, we choose something and then see what happens. The result of only increasing my lamotrigine dosage? Turn to page 46.