Tag Archives: Medication

My Epilepsy

The other night I couldn’t sleep. I occasionally get insomnia, which wasn’t helped by the fact that I had drank an enormous cup of regular coffee that day. I usually drink decaf. I had a very strange seizure very late that night, which was different than my usual ones, which generally are infrequent, but after that I still wasn’t tired, so I decided to go on a quest. In normal people language, that means I decided to do some research on different types of seizures. I found two different things that night. I found that I most likely suffer from what are called focal impaired awareness seizures. It describes my symptoms when I get “brain fuzz” almost perfectly.

What usually happens is I’ll have some warning before the seizure actually occurs. The warning is hard to describe, but it usually gives me a few seconds or even a few minutes to warn anyone around that I’m going to space out. Then, depending on how severe the seizure is, I usually don’t lose full awareness of my surroundings or black out, but I lose my ability to understand or use language, or if it’s really bad, I can’t process any audio at all. Most of the time I know that I’m going to have a seizure, and I’m mostly aware of what’s going on around me while it’s happening, and I’m aware when it stops. However, in the worst cases, I’ll have absolutely no clue that I’ve even had a seizure. Most people associate seizures with twitching on the ground and foaming at the mouth kind of behavior. That only describes one type of seizure. There are actually many. I’m writing this because while I couldn’t sleep the other night, I found another website where people could share their stories of living with epilepsy. I’ve mentioned my epilepsy here, but I haven’t really talked about it in detail, so I’d like to take this opportunity to do so.

A lot of the people who shared their stories talked about how they were diagnosed as teenagers or as adults. I was diagnosed when I was eight. I had a few seizures before we finally went to the doctor. I’m not sure why. I was given medication and never had a seizure until I was a Sophomore in college when I had a really bad one in March or April. My medication dose hadn’t changed since I was eight. Between an unruly brain, and too much work for finals, I almost did not sleep at all for the month of April. It was pretty bleak. I had discovered the band Tenth Avenue North by that time, and I almost exclusively listened to their song “Worn” through that time. The opening lines are, “I’m tired, I’m worn/ My heart is heavy/ From the work it takes/ To keep on breathing…” Needless to say, I was in a bad mood.

Over time, my epilepsy has changed, and I’ve had to increase my dosage of my original medication and introduce two others. I take a lot of pills, and I hate them. Some of them are hard to swallow, but without them, I wouldn’t be functional. Some peoples’ epilepsy is entirely independent of external factors or other bodily functions. On a lot of video games and movies, there is a warning for people with epilepsy that graphic effects or flashing lights might cause seizures. This has never been a problem for me. What is a problem for me is that I literally can’t be hungry. I have to carefully monitor how hungry I am, or I will most likely have brain fuzz. Plus, if I don’t eat I get hangry (angry because I’m hungry) anyway.

I have had a weird life post graduation because of my epilepsy. Because of my Muscular Dystrophy, as well as my epilepsy, I can never move out of my parents’ house. I can also never have a “normal” job, partly because I wouldn’t want my medical conditions to inconvenience an employer. The fact of the matter is, I am prideful in some ways, and I’m on social security. I hate that, but I have no other source of income. I keep up a blog and I’m writing a book because I can stop when my brain craps out on me. Because of my condition, I need a lot of sleep, and this enables me to get the ten to twelve hours of sleep that I need most nights.

I actually consider it a blessing in a way that I was diagnosed as a young kid because I can’t remember life without epilepsy. People on the website I found wrote how they were diagnosed in their twenties, thirties, or forties, and how it made them terribly depressed because they lost things like their drivers’ license, or in bad cases, lost the ability to work in the places they had been, doing the things they had been doing. I think epilepsy is one of those things you have to choose to laugh or cry about. While it is frustrating, I have to make jokes and laugh about it because I won’t let it rule my life. The fact of the matter is, though, that the prospect of having a seizure in public (which almost never happens), makes me uncomfortable. Quite frankly, if I can avoid even my family knowing, I will hide until it passes, and then act like nothing happened. Sometimes I have to tell, though, and ultimately, it’s important to do so, but it’s important not to make a huge deal out of it. The other night, when I had the seizure that was different than normal, I told my dad. It’s important to calmly explain what happened because, at least in my case, it usually isn’t something to be worried about.

It’s important also to let people who have had a seizure take their time to recover if they need to. Don’t freak out, because that makes the situation significantly more stressful for the person. Seizures suck, so you don’t want to be further complicating things. The best thing to do is to follow their lead. If it looks like they need help, try to help, but let them try to show you what they need if they can’t verbally tell you. Don’t make presumptions because this is unhelpful and annoying. Also, if you know the person well, and you know language might be an issue, like in my case, talk as little as possible. Talking puts more stress on the person because it makes the person feel obligated to respond when they can’t. If you know the person, and you can get them their medication, show it to them. If it looks like they need to take a little extra, let them take it. If it looks like they just need to sit, let them sit. Generally, the best thing to do is to be patient, and let them shake it off.

When my epilepsy came back with a vengeance in my sophomore year, and then morphed over time before finally stabilizing, for the most part, it both scared me and pissed me off. I hadn’t had any seizures for about twelve years, so the fact that I was dealing with this again seemed very unfair. As I said before, though, epilepsy is one of those things you have to choose to laugh or cry about, and these days I mostly see it as an nuisance. It doesn’t stop me from playing music, or making mosaics, or painting pictures, or writing a book. It doesn’t stop me from loving, and it doesn’t stop me from having fun. Most importantly, it doesn’t get between me and Jesus. The other night, I couldn’t think because language was inaccessible to me, but he wasn’t. I knew he was there, and when language was finally starting to come back, the first four words I managed were, “Jesus, I trust you.” I won’t pretend that seizure didn’t scare me, but it would have been far worse had I not known he was there.

Because in my world guinea pigs can fly!

Random Banter

Humans, as I write this, you should see my hair. My bird is sitting on my head, my hair is all over the place, including in my eyes, and he has made a nest. Every time I go to move it out of my face he growls at me. I am harboring a demon bird.

Anyway, spoiled animals aside, I have good news. I started a new medication a few weeks ago to better deal with my epilepsy, and it really seems to be working. I’ve had two or three little problems within about a month, which is nothing compared to what it had been. The beautiful thing about it is that I can do things I couldn’t before. Before I literally could not be hungry without having problems. Now I have to be pretty famished to have any trouble at all. I can also turn the water on as hot as I want in the shower. I don’t know why the hot water messed me up, but now I don’t have to worry about it.

The other good news is that I’m going to start working with another songwriter and producer in the near future. She and her boyfriend are working on a project centered on love and, in her words, “positive energy.” The nice thing is that, I asked, and worship music is totally on the table. I’ll do a little bit of everything. I like to be subtle when I write worship stuff anyway. I haven’t done a whole lot of songwriting lately because I’ve been reading and writing everything else. It’ll be fun to get back into it. I don’t expect this to be a super serious project, but the style of music is one I usually don’t delve into, so I think it will be good in general to get outside my comfort zone. Plus, you have to write to defeat writer’s block. Go figure.

I don’t really have much else to report. I’m kind of in that weird position where I have too much and not enough time to kill. My dad should be home soon, and my godmother is coming to stay for a few days, so that should be good.

Because in my world guinea pigs can fly!

The Things I’m Thankful For

I know Thanksgiving was a couple days ago, but I haven’t had time to get to a computer until now.

My aunt did this “month of gratitude” thing where she had to post something she’s grateful for every day through the month of November. I thought I’d do my own list and share it with you guys.

1) My family… the huge, insane, lovable mess that it is
2) My friends… for introducing me to lots of good movies and music and for always being there
3) Music… for getting me through every allnighter and making me happy
4) Movies… because they are wonderful. Nuff said
5) My faith in God… I don’t know where I’d be without him
6) Coffee
7) Chocolate
8) My bed
9) The wood stove in my basement
10) Cute animals
11) My education
12) My mom’s accessible car (even though it’s falling apart)
13) My wheelchair
14) Electricity
15) Humor
16) My insane dreams
17) The ability to use language
18) The ability to make music
19) The ability to help others
20) Forgiveness
21) Love
22) Art (literature & visual art)
23) My medication
24) Technology (even though it insists on fighting me most of the time)
25) Video games
26) My eyesight (as crappy as it is)
27) My hearing (because it’s awesome and therefore I’m super good at eavesdropping)
28) Traditions
29) The sacrifices people make for me and for each other
30) The absurdly satisfying clicking sound my keyboard makes when I type

Because in my world guinea pigs can fly!