So, I've said some crazy stuff after my "spells." Usually, I have no recollection of these quips, unless someone clues me in. Apparently I said "Oh calm down you old battleaxe" to my mom once. Well, my friend told me that I was talking/typing a little odd mid-seizure. Like what, I asked. I then realized that I have my chats logged, so... behold the glory of a brain malfunctioning. [I think I'd taken my liquid medicine by this point.]
S****a: haha i bet youre feeling just great right about now me: like jorge harrison playing sitar with jeus chirist hisssssself]
Come to think of it, George Harrison always seemed to have that nice and relaxed vibe, you know?
One morning, when I was on four different pills twice a day, I developed some rash on my hands. I'd been having problems with both splitting headaches (spinal headaches caused by a test for meningitis) and a rare form of epilepsy. My parents thought I should get my palms checked. Since the urgent care down the road wouldn't see me, due to unusual medical history, we had to travel 45 minutes to the ER at a hospital where I'd spent a significant amount of time.
When they got around to checking me, the young, fresh-faced doctor decided to send my parents out of the room for a minute. He then started asking me about my sexual history, which was less like a history and more like a footnote. Did I know that St Louis was the Syphilis capital of the US? No, I didn't. Did I have a rash on my feet? Nope, just on the hands. Had I been bit by an exotic spider? Nope, possibly a sick bat, but that's another story.
After my parents came back in, knowing that they'd asked me about that ever so delicate subject, we all decided the guy was a quack. Sure enough, I'd just had an allergic reaction to one of my new medicines, a steroid call Prednisone. One strange thing happened. I suddenly could stand up without a debilitating headache (I'd been bedridden and filthy for a month). My poison had also been my antidote!
I thought of this years later, when news broke of rampant use of steroids in baseball. Signs of usage were acne, cranial enlargement, and quick healing. Turns out just about everybody was on PEDs, from the best baseball players to Rocky himself, Sylvester Stallone. It started to make me think, are all of our heroes just injecting greatness like Popeye's spinach?
I'd seen this article at a favorite steroid-related blog. Police and firefighters? They're our heroes I thought, trying to save lives. Who cares if they do something to "enhance their performance." They have a better chance of protecting. However, soon after, in light of a recent event here in town, I began to wonder whether the free reign had exploded into cases of cop 'roid rage. (It's a long video, transcript here)
This reminded me of something else, ethically. I've heard anecdotes about soldiers using steroids, trying to build muscle mass. It had even been in the news. If you immediately say any drug user isn't your hero, then you must remove the soldier posters from your wall. But don't we want the best soldiers? Why should we put any limitations on them, when clearly, many other countries have advocated doping programs (China, Nazi Germany, USSR)?
I don't know that much about steroids, other than my short bout with Prednisone. The one thing that stands out in my mind, however, is a series of events that happened when I was working at GNC, in high school. A cop came in one day, and we had a brief chat about how he knew my dad, when my dad was mayor of our small town. He then started to ask me about some of the heavy duty stuff we sold in locked cases. Finally, he came out and asked the question he'd wanted to all along. "Do these shrink your balls? I heard from a buddy on the force that they do." He didn't buy them, and coincidentally, he was at a sobriety checkpoint a week later, and recognized me, and was a really friendly guy.*
A short time after, a kid from high school started asking me questions. Did we have what Mark McGwire was on? I said sure, we sell Andro poppers. I told him that he could use them, and if he didn't like them he could just return whatever was left, even if he only had one pill left. So he stopped by and picked them up.
The next day at school, we were at some computers in creative writing, and he says to me, "Dude, those things are crazy. I only slept 2 hours last night and I feel like I slept 12." I thought to myself they may have been more powerful than I'd imagined. I figured he'd be using them for awhile, but that weekend he came into the store to return them. No real reason, he said, he just didn't like them. I still to this day don't know why he wanted out of the performance enhancing game. But then again, in a world filled with secrets and lies, it's nothing new to be in the dark. All my childhood heroes are suspect. It's a damn shame.
*In fact, I don't think I've ever had a bad experience with a cop, except for once when I asserted my rights and didn't open the door for the police during a party. Not many people know that you can just not answer. This guy didn't like it.
When I stopped over at my parent's house last weekend, my extremely literate family handed me the front page of the Wall Street Journal. On the front page was an article talking about how the Epilepsy Foundation, with support from big drug companies, is making laws about doctor control over prescribing brand name drugs.
Now, I read The Truth about Drug Companies, and I know for a fact that generics are the same chemically as brand name counterparts. The only difference is the amount of advertising and various donations and gifts (i.e. bribes) that Big Pharma churns out every year.
Now since my last seizures, in May, I decided I should finally accept my condition, so as to get over it. I signed up for an account on the Epilepsy Foundation and found a group on Facebook that provide support. It's helped me realize I have it pretty good, all things considered. I even picked up Epileptic by David B., a graphic novel (i.e. comic book) that conveys epilepsy in a way no one has before or since. The images of epilepsy as a ghost and a series of mountains to climb both resonate with me.
I even found a blog entitled Cookie Wonton, through it's sending of visitors to my site, written by a mom talking about raising two kids with epilepsy. It's an interesting perspective and has a fresh tone, I'm lucky to have found it.
The WSJ article struck a nerve though. Personally, I feel like neurologists should be able to prescribe whatever. No one should be able to alter it. So I like the move. My doctor was clearly irritated by the quick swap Walgreen's made, switching me to a generic. But he acknowledged, like the doctors in the article, that essentially, chemically, there is no difference in the drugs. It's an interesting topic, and I'm sorry if I'm boring anyone about this, but when something is like a monkey on your back you can't help but try to rationalize it.
Read my post at the Foundation here and my post on the Facebook group here.
So I should probably update my handful of readers on what happened to me last week. If you're feeling squeamish you should probably NOT read this, as it was traumatic enough to keep me away from my apartment for a week.
Basically, I woke up at 6 am a little stressed about things, a little bored with my job. You know, the usual deep thoughts you try to block out of your head. Well, before I could change my thought process, it was 6 or 7 at night and people were all in my room giving me medicine.
My back hurt like hell from twisting or falling, my teeth were a little cracked from falling or biting too hard, and my tongue was chewed to the point where I was on top of a bloody, puke covered pillowcase.
I thought I was pretty healthy before this, and before the last one I was even convinced I was somehow healing (see this). So it was a pretty big bummer, physical annoyances aside. Now I'm scheduled in to have my teeth fixed, my tongue is almost done itching as it regrows, and even my back might be ready for the co-ed soccer game on Sunday.
I decided to take a few positives from this, and one is that I need to be more social, I need to get out and maybe even consider a career change eventually. I lined up the GRE a couple Fridays from now. And I even decided that I don't have epilepsy that bad... so I jumped on the Epilepsy Foundation's website and figured maybe I could have something to offer people, and in the process maybe get something out of it myself.
One other thing- I finally got around to uploading the video of my "typical" seizure on to YouTube. So, if you're wondering, 0:17 - 0:11 is when it occurs, and I just keep looping through consciousness/unconsciousness. That is what wasn't treated with a little bottle of liquid last week. It evolved into something more major, and my memory is then wiped clean.
Let me preface this journal entry by saying sorry if I get a little technical or unclear, but I'm trying to get the information out before I forget everything. I'll add links later, and if you have questions/comments/suggestions, feel free to post.
This morning I woke up and a rock song was playing over and over in my head. This has happened before to me, once with "Welcome to the Jungle" by Guns 'n' Roses, and once with an Audioslave song.* I'm blanking on the one from this morning, but the point is that I had a repetitive clip of music in my head and I couldn't think of ANYTHING else. My first thought, was, here's my aura, I'm going to have a seizure.
Well I've tried to counteract this the few times it's happened by just thinking of some other song. But the rock had won out over all my other thoughts. This morning, however, for a certain reason the first song I thought of was a repetitive song with clear lyrics. Think of any pop song with sugary sweet, memorable lyrics.**
I noticed that the more I thought of the first few lines the more it helped. I had either just talked to Cassidy on the phone or called her up, and she told me she had the flu and said she was "clammy," a word I had her repeat for my own entertainment. Eventually, for some reason it seemed like I avoided a seizure, because I ended up at work feeling a slight headache.
The reason I say I avoided a seizure was because mine have never stopped on their own- they are always chemically stopped***. However, as the day has gone on I've realized that maybe I did have a seizure and it was just stopped in its tracks. For one, I have a splitting headache (ironically making me happy!) in the areas of my brain where I have my seizures (forehead, above the left ear). Also, I don't remember what exactly happened this morning and in what order. This means my episodic memory was impaired, which happens when I have my seizures.
So sitting here (coincidentally, in a neuroanatomy laboratory where I work) I decided to do some research. Auditory auras are known and documented, although I haven't found anything about the processing of rock 'n' roll vs. sugary pop music. But I do know that I couldn't play a saxophone right, or any musical instrument for that matter (except maybe a recorder).
But think of this- seizures are just your brain cells firing too quickly and indirectly. My conscious thought to focus on repetitive, predicable music patterns may have had an effect on focusing the brain firings. Think it's too far fetched? Well how about this- I looked up how your brain "hears" music, and it's done in the auditory cortex, right between the two lobes of my brain that are affected by my seizures. But what happens when we think of music?
Notice in the figure how my symptoms are all in one area. Face movement is right near the auditory cortex, which would explain my facial twitches during seizures! And most telling, the area that controls vocalization, Broca's area is there too, which would explain why I can't talk during my seizures****.
I'm still researching this but I'd be willing to bet that when you think of music, it is sent from somewhere else to the auditory cortex. This is why you can "hear" when you think of music. That pathway must still have been working, and it worked to override the powerful melody residing in my auditory cortex (right above my left ear!).
Think of it this way, there was a battle of the bands in my head, and only one band showed up because of traffic problems. A second band finally showed up and won by taking an alternate route. Make sense? It's all about the brain's firing and wiring.
Interesting sidenote: I was looking for papers on auditory auras, and who did Google pull up? My neurologist. Who, coincidentally, now works across the street. Try to get your head around THAT. Suffice to say I'll be asking him about all this.
* It's probably important to note that I don't listen to much rock, but in all three cases I had listened to the song the day before in some context, and it was a song I particularly like. ** It was "Girlfriend" by Avril Lavigne! *** with Diazepam (aka Valium). Not to be confused with Zonisamide (Zonegran), the daily pills I've since stopped taking (see the last journal entry). **** If you're thinking, oh this means he has a tumor! Trust me, they've checked and "It's not a tumor!" It could be childhood trauma (I fell down steps and landed on my head as a kid), it could be a side effect of Accutane, it could be the fact that I was drinking lots of booze and taking sudafed and not eating right the week before, it could be anything but a tumor. In fact, there's even an interesting voodoo doll theory that I'll save for another day.
Zonisamide takes 105 hours to fully leave the human body. I stopped taking it last Wednesday. This means that sometime in the middle of the night, I became prescription-drug free for the first time in a shade under 4 years. Why drop the pills? Well, for one they made me ornery. Two, they made me not like food. Three, they made me stupid, especially when I took 6 per day.
So imagine a dumb, moody, skinny version of yourself* that you have to inhabit, just because of little capsules that apparently cure your rare form of epilepsy. Why wouldn't you take them out of fear? I'll tell you the fourth reason- big pharma is big-time evil. Read something about it here.
If you're not the clicking type, let me explain. I was on 6 pills a day of a designer (not generic) drug at the start (Zonegran), which costs $2 a pill. That's $12 a day and ~$360 per month. I paid $25, and my medical insurance was paid for by my parents then, but now it's $110 a month (for the second tier of coverage). So where did the drug company get its $250 a month? From taxpayers (through subsidies) and the healthy.
$250 a month is $3000 per year that people were paying for me. Thanks for that, everyone. But I can do it all alone now. How? Exercise and stress management. Live life and have fun, not worrying about money and all that jazz. Oh, and sorry to my neurologist, I'm sure Esai/Elan/Pfizer weren't happy with your lowered prescription rate of the drug. Also, my weight data was probably unreliable because I did a little fibbing about what I was taking... Sorry big Pharma, I know you were trying to make this the new weight loss drug on the sly, without my consent. Why? 'Cause I googled my drug.
Also, sorry to anybody I've been a whiny baby to the last 4 years. I don't feel that part of me anymore. And it's great.
