Sitar. Happier. More Productive.

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?

I Have It, But It Doesn't Have Me!

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.

Vampire Blues

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.

Patterns

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.

Bye Bye Supermodel Drug

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.

*That's why it's called a supermodel drug.

\V/ikipedi4

So lately I've been brushing up on cocktail conversation topics on Wikipedia. You know, like cults, serial killers, and drugs. Things that can keep a conversation going after it starts to trail off because no one knows for sure why Ted Bundy became a murderer. Next time this happens, just drop another ice cube in your Manhattan and say, "Well, it could've been the tap dancing grandpa, but my guess it was the fact that he was led to believe his mother was his sister for a good part of his life."


The amount of information on Wikipedia is astounding, many many times any encyclopedia ever, even though you run across lots of "joey blanco is pwnned suxxors" 1337 speak. Don't know what 1337 speak is? Look it up, holmes, right here. And granted, a lot of it is slightly incorrect, as the Onion made light of in this picture.

But as some people know, I have a little illness that is so rare that it isn't in Wikipedia. So what to do? I created a page here, and then linked it another page. You could edit it for some laughs, like Stephen Colbert. But then I'll have to pwn you.

EDIT: as much as I (don't) want to put my face on the page, I've thought about taking a video of myself having an episode next time it happens. Cassidy plans to if she's there, but since they happen once every 3 months, it might be a month or two before you see my youtube video of this linked from the page, haha.