the wrong side of the bed

Thursday, March 30, 2006

note to zombies: steer clear of this one, it don't look so good

well, it is done. i've got my diagnosis. temporal lobe epilepsy. there is a region in my temporal lobe that is either underdeveloped* or a tumor. there is really no way to know if it is a tumor without cutting out a bit of it and taking a look-see. there is no plan to do that. anyway, the doc said that it would be treated the same way (medication) even if it is a tumor. but, they will give me an MRI every six months to monitor the region and make sure it isn't growing. yep. sounds good.

they are putting me on lamictal. fewer side effects than some of the other options. for example, he said they could put me on depakote, which is very effective, but only if i wanted to end up "fat, bald, and shaky." i guess i don't. lamictal has only one scary side effect, but it is a doozy: the possibility (very low) of developing a FATAL RASH. fatal? i didn't know that rashes could be fatal. they can. basically i would develop chemical burns on my body and my skin would slough off and i would, um, die... somehow. but, the chances of developing this rash are low. and if i notice a rash, i should call them immediately.

also, and this was the worst part, i asked him if having seizures does anything bad to me. you know, permanent damage and all. he said that the jury is still out on that one, but that there is some evidence that in the case of people who have been having seizures for a long time, there is more of a chance of damage. more damage means more seizures, which would be consistent with the increasing number of seizures i have been having since i was about 16. yep, a good 13 years worth of untreated seizures. he said that there is an old adage, "seizures beget seizures," which i have never, ever heard before. kind of pointless for old adages to be kept all secret and stuff. i might have started getting worried sooner if i had known of it. anyway, i'm going to start tossing that one around just so other people hear it. the other possible damage done by going untreated for so long is that i might not respond to medications, which would mean surgery, but that is a loooong way off.

* the doctor kept saying that there was a part of my brain that just didn't "mature" when i was developing. he said "mature" in a way that makes me shudder. i'm from the camp that says MAH-chur. he said mah-TOUR. and my skin crawled right off of my body.**

** possibly like it would if i get the FATAL rash.
7:04 AM


I am with you on "mature."

And at least they mentioned the rash, unlike a number of people who gave me coumadin and then waited for me to a) notice that I was developing hives and b) look up the side effects of my medication on WebMD. And even then, only my personal hematologist (nobody else in his office) treated me like I wasn't a nutball.

Anyway, I hope that you haven't become seizure medication resistant, and that this treatment is effective. It certainly sounds promising, although obviously it's not great that you were misdiagnosed for so long--but now at least they're giving you the right meds.
Blogger Rhymes With Scrabble, at 9:59 AM  
I'm so glad they finally diagnosed you correctly, but jesus christ, could they have waited any longer? And it was your idea to check up on the possible seizure idea, right? Are doctors just total idiots? I mean it didn't occur to them that treatment wasn't working so it might be something else??? Did they say that a possible side-effect was RAGE at the medical field? Argh!!!

Well, that out of my system.... good luck starting the new medication. I am feeling optimistic for you.
Blogger AK, at 10:49 AM  
RWS: but, was it nearly FATAL when you got hives??? yeah, i agree, though. why do people have to treat you like you are crazy when you have a problem that no one is addressing properly?

AK: my mom is about ready to come up here and kick some ass, too. rage is definitely a side effect.

anyway, i feel optimistic, too. i also feel itchy, but i'm sure that is in my head!
Blogger dorotha, at 11:05 AM  
That sucks that they couldn't get their butts together for so long. The older I get, the more incompetent docs I see. But yeah, the diagnosis is really hopeful, because as G.I. Joe says, knowing is half the battle. I guess the other half is storming your doctor's office with a Nerf Crotchbat (tm).
Blogger A+, at 4:48 PM  
What's that bump on my... AAAARRRGH! (I die.)
Anonymous Anonymous, at 12:00 PM  
I'm optimistic too, Dorotha. In fact, I think I might just have to get you a parakeet. I saw a show about an epileptic woman who had a parakeet that alerted her when a seizure was coming on so that she wouldn't be in the middle of doing something dangerous...say, stoking a fire.

I also agree on the "mah-tour" thing. I think the people who pronounce it that way also tend to say "poo-berty" instead of "pew-berty." Ick.
Anonymous Anonymous, at 9:40 AM  
I have had TLE for 33 years. I was just diagnosed in February. The TLE likely stems from a fall when I was 6. I am now 39. So, I'm still alive after so many years undiagnosed. I have three degrees, know multiple languages, had a wonderful career with an international concern, and then - 'pow' the seizures just started getting worse.
I sought help. All those years I had work arounds for seizures, ways of dealing with those 'fits'.
Lamictal has helped me. I'm on a lower dose as I am still undergoing testing. Please don't worry too much about SJS (the syndrome that makes your skin fall off). You'll notice it if it starts. I've had hives, but these can also be seizure symptoms, so take care, but please don't worry too much. Its so good that you were diagnosed so early. I'm jealous.
best regards
Anonymous Anonymous, at 11:03 PM  

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