[Kix]

Hello I'm new to this forum, not so new to seizures though.
I've had them all my life, due to being shaken as a baby, as well as a severe blow to the area right between my eyes when I was 5yrs old. As a child they were mild, petit-mall, I’d blank in and out, or do weird things, like crawl on the floor. I was put on Dilantin, as well as a tiny red pill, that i cannot remember the name of.
At 12yrs old my step mom took me off the Dilantin thinking it was making me to lethargic. But then the seizures changed into more of what looked to her as a fainting spell (that she thought I was faking). I had these type of seizures for many yrs. until my husband made me go see a specialist, and since then I'm back on Dilantin, at 600mg/day. But as i grew older, they've worsened and are now full blown grand mall.
My neurologist says that the seizures are in the part of my brain that regulates blood pressure, very rare, and according to nurses and emt's my blood pressure drops to such a degree, that brain damage can occur, as well as my pulse drops into the 30's bpm. I believe damage has occurred, my ability to learn new things is greatly reduced, as well as being able to retain what i learn.
Most times but not all, I have an aura, which gives me time to get to the floor, they are very scary now, I’ve had where I lose bowel control twice.
I am 44yrs old now, and for the past yr or so, i get woke up by tingling, pins and needles, around my heart area. It starts off mild, and continues to increase in intensity until I can barely breathe, hurts so bad!
From onset to peak can be anywhere from 20 min, to a couple hours, feels like something is squeezing my heart, and when I finally subsides, I get the same 'rush' in my head that I get with the grand malls.
My neurologist no longer sees patients, and has gone off to be a professor at the Mayo Clinic, such is, I've bounced around dr to dr, trying to find one that knows how to treat the 'rare' or 'non average', the doctors I’ve been to about it, and my epilepsy all do the same stupid eye hand and reflex tests, tell me, "well you look fine now.." and send me off with a refill of Dilantin for my EP, and the heart thing, they do the typical ekg and never find anything, as usual I’ll probly have to have one right in front of them for them to figure it out.
I've searched until I'm blue, and all I come up with is the same broken link to a 6yr old boy who had "Chest Epilepsy". So, I'm asking, in the longer roundabout way, has anyone here had this? Or know of someone who has?
--- Kix