VNS Update - okay, how's this for weird...friday the 13th i go to the neurologist, for a followup after all the seizures. still baffled as to why i had 4 seizures in one day, since i'd been taking all my meds and the VNS was zapping me and all - what the hell's going on?!?!? not only that, subsequent bloodwork i had after getting out of the hospital showed my dilantin level was 6.9 when it shoulda been in the 10 to 20 range - what the hell?

so, the nurse brings in the VNS computer, says that they like to check it out every time i come in, even when i'm not coming in for a change to the VNS settings or whatever. well, when dr. mohan gets me all plugged in, and he finds that my stimulator isn't set to the settings he'd programmed me for last time!!!

previously, he had set it to turn ON at 0.50 mA (milliamps) for 30 seconds the normal charge, then 5 minutes OFF - using the magnet to turn it on would start it at 0.75 mA. what he'd found was that instead of ON 30 seconds, OFF 5 minutes, it was ON 30 seconds, OFF 180 minutes - instead of going off every 5 minutes, it was going off once every THREE HOURS!!!!

well, perhaps that's the freakin reason for all the seizures!!?!!?!!?!! things were fine & dandy, i was getting zapped appropriately and taking all my meds, then something happened and all of the sudden the VNS (aka the Zapper) wasn't working correctly!

dr. mohan was flabbergasted when he saw the settings on the computer - asked me if someone else had made any changes to the VNS settings....er, nope, not that i know of! so now it's a brain strain after he asked 23489 questions - nope, didn't have a mammogram, no MRI's or anything like that, don't recall being around any strong magnets...when the hell did the settings get changed and HOW?!?!? i need to know so that i can avoid it happening again. i thought that i'd gotten used to the stimulator and that's why i wasn't noticing it every 5 minutes, but rather several times a day - guess that wasn't the case!!

so we've made some changes to my meds...i'll be weaning myself off of the dilantin while beginning to take a new seizure med, Keppra - the hope is to be on that and be seizure free for a while, then we'll wean myself off of that as well...

we've also upped the stimulation on the VNS - 0.75 mA (milliamps) for 30 seconds the normal charge, then 5 minutes OFF - using the magnet to turn it on starts it at 1.00 mA

while all these changes are being made, my seizure threshold is going to be lower, so doc told me to take a couple of weeks off of work. as tired as i've been, i can't say i'm crushed to have to take time off work, tho my paycheck will be crushed.