the new girl

[stereolabby]

I happened upon this site as I was reading about medications.  Such a wealth of information.  Hello, then.

I guess an introduction is appropriate. In a nutshell (I fear boring the lot of you): With nothing but a bastard of a seizure as a warning, I was diagnosed with a right, frontal cavernoma 1.5 years ago.  An ultra scary allergic reaction to Dilantin and Tegretol followed shortly thereafter.  When my white count leveled, I underwent an 8 hour craniotomy experience and I've been on Keppra (and a sprinkling of anti-anxiety meds) ever since with excellent results.  I am overly anxious...I tend to be a hypochondriac of sorts.  A 'normal' headache spins me into an anxiety attack of mad proportions.  I could say more, I suppose, but I won't.  Cheers.

[Sulu]

Hey, Stereolabby

Welcome to the world of crazies.  Lots of good information and lots of good people here.  Post away and make yourself at home.  Sulu

[grousemouse]

Hi Stereolabby,

did you actually say, "I fear boring the lot of you"??!

holy crackers, as if you could with that (brief as it was) history. yes there are lots of people here, many with huge stories, but yours is certainly unique. i'm in no way a medical person but because of what i suffer (major depression mostly) i've become accustomed to the lingo with things even loosely related to it. and from reading other's tale's i can at least follow along with what they say.

but yours is clearly unique because i have no idea what actually happened to you.

i hope i don't sound flippant or anything here because you have obviously suffered a huge trauma which must have been absolutely terrifying, but i just want to emphasise that i've never read anything like your story here. so welcome here and i look forward to learning more about your experiences if you are willing to share them.

glad you're here,

grouse.

[stereolabby]

(I think)you asked..so:

I was taking photographs when I noticed that as I looked through the lense with my right eye, I couldn't seem to keep the left one closed.  I chalked it up to a funky eye twitch sort of thing.  Two days later, I was at a picnic when all of a sudden my left arm went numb.  Within minutes the left side of my face went as well, along with my ability to speak...any decipherable words, anyway.  By the time I got to the hospital (my boyfriend-now-husband drove, obviously), I was able to tell the idiot ER receptionist person my address, then the march set in again...zapping my speech altogether.  I had a CT and an MRI...I was told I had a mass on the right side of my brain.  I was in the ICU for 5 days with no episodes, I was discharged with some residual dexterity problems with my left hand.  I was given a script for dilantin  & told to return in 6 weeks(!!?!).  Leaving the other neuro in the dust, I immediately went to a specialist for a second opinion.  He diagnosed me with a cavernoma..a malformation of blood vessels on the surface of my brain tissue.  Due to the size of the mass (like 1/2 dollar sized), it was determined to be a congenital thing that had been slowly bleeding since I was in diapers...it would bleed a teensy bit, then stop.  Over the years the same thing happened over and over until the ol' noggin was faced with enough pressure from the blood (I know, ew...gross)  that I had a seizure.  I was scheduled for surgery until I was awakened with a fever of 104 and the dreaded RASH (I think you all know the monster I speak of) from the dilantin.  I was pumped full of steroids..it got a bit dicey.  I distinctly remember calling my vascular surgeon, telling him of the rash and him saying "is your skin sloughing off?" Christ almighty.  Anyway.  I managed to deflect SJS.  I had brain surgery..the mess was removed.  I had seizures after the surgery, nothing as bad as before. I manage them with Keppra now.  I have no speech of dexterity problems whatsoever.  At times I trip over my words, my neuro thinks it's because I talk too fast, brain surgery or not.  Anyway, the surgery was necessary to keep the little vessels from having a blowout, resulting in a possible death situation.  So there's my story.  To this day I have a huge crush on my surgeon.  The greatest sense of humor for a chief of cerebrovascular surgery.  As a result of all of the aformentioned goings-on, I am a bit of a hypochondriac, get frequent headaches that freak me out big time ("AM I BLEEDING INSIDE??"), panic attacks..the whole kaboodle. I am having a headache problem right now..for the last 5 days, actually.  Cheers.

[grousemouse]

hi stereolabby,

yes, i did ask. i didn't want to ask outright in case you didn't want to talk about it.

wow. i can't imagine going through all that. how horrifying. i hope you are really better now. i don't think your 'hypochondriac' feelings are that surprising though. hardly.

are you getting some therapy for your anxiety? i think that would really help.

grouse.

[stereolabby]

hi stereolabby,

yes, i did ask. i didn't want to ask outright in case you didn't want to talk about it.

wow. i can't imagine going through all that. how horrifying. i hope you are really better now. i don't think your 'hypochondriac' feelings are that surprising though. hardly.

are you getting some therapy for your anxiety? i think that would really help.

grouse.

<{POST_SNAPBACK}>

First of all, I am for the most part, better than I was...I have my days.  With my husband away working in Europe and no one to sit up with me at night, I can't tell you all how comforting this site is to me.  Secondly, (sidelight) I had scheduled an appt. with my neuro for yesterday, got to the apt. at 8am before work and he called in sick.  Bloody doctors aren't suppoed to get ill.  I had to reschedule for tuesday.  It's going to be a loooong weekend.  I had a mild seizure today while at a team building event at work and I'm in a panic.  Induced by stress, I'm sure.  I phoned my mother for support and, well, you can imgine that situation. 

I'm a glutton for punishment.  As far as therapy..I work full time and it's difficult to find someone I like (as in someone who doesn't have a degree frothe uni. of the Virgin Islands or the like) who has late hours.  I manage though. I'm feeling like quite the mess lately, actually.  Blah.