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Old 09-20-2008, 04:46 AM #1
mamaof6 mamaof6 is offline
Junior Member
 
Join Date: Dec 2007
Location: St. Louis MO
Posts: 22
15 yr Member
mamaof6 mamaof6 is offline
Junior Member
 
Join Date: Dec 2007
Location: St. Louis MO
Posts: 22
15 yr Member
Default Someone Please have some answers?

I have held my head high through out everything the best i could, but its really starting to get to me. I had my status event in July, which got my insurance straightened up, and got me into a neuro finally, thought things were looking up. But, alas, the szs increased, I know i am having them in my sleep bc i am waking with sore jaws, groggy, and feeling like i just had a seizure. I am having auras through the day two to three times, and convulsive seizures proceeded by an aura about once a week. Monday, they increased, and I had a tooth that had absessed, my family called the ER and the nurse said it might have something to do with it, to come in and they could try and drain it. (MIND YOU the neuro will never call me back, and when he does and discusses the szs with me he increases my meds.. i have went from 200 mg of dilantin on 7-1-08 to 400 mg of dilantin and 200 mg of topomax which i know is not alot compared to some ppl but it leaves me loopy) I end up at an ER that is not my hospital bc mine is full, and the er dr is tryingto drain this abcess, and as he has the needle in my jaw, i begin an aura, i get his attention just in time, and he removes the needle and i begin to convulse, he puts up the railings and i grab a hold of them and begin to cry out for my friend who is out of the room, and he steps back and crosses his arms and very coldly asks how long will this last. OMG!!! well...it stops, only to be immediately followed by another, and another and another totally seven before they get an IV and shoot me full of ativan. I could feel my body going into status and was just praying that they got it stopped in time.....I got transferred to my treating hospital...completely out of it, bc while waiting to be transported, i began to break throgh the ativan and the lovley dr came in and gave me more. The neuro on call said my seizure journal was worthless bc it did not describe the szs in detail, he was rude and kept confusing me. had me in tears, told me not to yell at him...which i wasnt....i just was frustrated...NOW i wiSH I HAD! I called my neuro who worked in the same clinic with him the next day and he was a complete jerk with me again, saying i should have been going to the er with every sz even though the er was over an hour away, and that they were going toschedule an impatient eeg to find out what these EPISODEs are .....Now they are not even calling them seizures....and where they are coming from....MIND YOU i have had brain surgery, for an AVM, I have a meningioma, and i have mesial temporal scelrosis, NUMEROUS EMTS friends family members and drs have witnessed my seizures...and they are calling them episodes....are they sayin it is all in my head now??? whats going on???
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If I had to have a tumor this one is the best kind!!!
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