How bad is test where u r removed from meds & allowed to seize?

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I went to the doctor Tuesday and told him I had 2 more seizures this past month. I have at least 2 a month and have tried Dilantin (still on), Keppra, Topamax, Zonegran (just started), Depakote...and one more I can't remember. He says he is going to send me to get testing done where they take me off my meds and let me have seizures while hooked up to some stuff. He said surgery may be a possibile help to me. Its really scary to me and I was wondering if anyone had any info they could tell me. Thanks so much!

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Submitted by ackling17 on Tue, 2006-08-29 - 19:43

and if i have to get a video eeg i'd have a seizure litterally every 10-15 minutes. the stress of feeling like i'm being smothered or drowning i think might kill me. i forgot to mention that i hyperventilate for 5 minutes after it, so having one for 2 minutes, hyperventilating for 5 minutes, and being scared out of my mind for that whole time, gives me at most 10 minutes before i have another one. i dunno that would be the worst thing in the world, i'd rather die unless surgery was guaranteed. i just want this shit out of my head!

I'm in Canada and had sugery

Submitted by solis on Sun, 2006-08-27 - 15:19

I'm in Canada and had sugery early last January. There are 'some' differences in testing between Canada & the USA... eg: everyone in the USA gets the WADA test, but here it is only done if there is a specific need. As my seizures were from the left temporal lobe; the posibility of negatively affecting language existed, so I did have the WADA. I didn't have brain mapping done, as many Americans do, as via other tests it was obvious exactly where the seizures were coming from. However, all Canadian and US possible surgical candidates that I have ever met, say they went though the VEEG test. It truly isn't that tough. (Ok, it's a drag not showering for however many days they keep you in hospital, but the test itself isn't that bad.) I was given a date to go to the hospital.. from there they sent me to the EEG area where my head was filled with wires. Then it was off to the surgical area.. (there are 4 rooms in the area here so there is company). After being put into my room, the wires were attached to a portable EEG machine that I could walk with. There is a video and an audio on the room at all times, and I could only walk from my room to either the nurses station or the washroom on the opposite wall. Most of the time I was on my bed reading. As directed, I had reduced my meds before going there; so, after 2 days there, they were completely deleted. I don't remember having any seizures.I do remember nurses asking me stupid questions like "where are you" "what day is it".. I wished someone would write down my answers as I was tired of telling these nurses the same thing. I got no aura & I remembered no seizures whatsoever. I discovered later that in the 5 days I was there I'd had 11 seizures.. which brought home the fact that they can happen and I'd be completely unaware. Very depressing. No worries about what you may scream after.. these nurses focus on epilepsy so are well aware of various behavioural differences. Know I wish you both the best, ~sol

Re: How bad is test where u r removed from meds & allowed to sei

Submitted by dshell on Sun, 2006-08-27 - 19:25

The last week of July, I was in Thomas Jefferson Hosp in Philly and had my VEEG. I stayed for 8 days. On the first day, they attached maybe 20? electrodes to my head with some kind of glue/cement. Those things did not wiggle off my head. I was hooked up to the monitor and just had to wait. On day 2, I had the two electrodes in front of my ears removed, and wires inserted to replace them. Just a little unnerving to have wires in your head. The Dr.only reduced my meds by @25mgs each day so by day 4 nothing had happened. Day 5 was no meds, and that night I had 3 seizures, one being a grand mal. I was able to go home on day 8, and I was definitely ready to wash my hair. I was able to shower daily, the nurses unhooked me from the monitor and wrapped the wires around my head, and then wrapped my head inside a plastic bag, almost like a turban. I am now scheduled for a WADA test to see if I am a definite candidate for surgery. I hope this info helps you. Let me know what happens, Diana