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How bad is test where u r removed from meds & allowed to seize?
Fri, 08/18/2006 - 14:49Topic: Surgery and Devices
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!
Comments
Re: Re: Re: Re: Re: How bad is test where u r removed from meds
Submitted by gretchen1 on Fri, 2006-08-18 - 22:55
Stef I'm SO impressed you watched your whole video I can't hardly read anything else on this thread! No fooling! I asked to watch one absence and felt light headead. What a brick are you!
In ye early days I was also told, once, not to take my AEDs for an EEG. BIG mistake. I sz'd like crazy but I sz far more than the thread starter ON AEDs. Now? When I have a VEEG (I have had 3) or an EEG? My AEDs aren't messed with at all. I had an EEG with Evoked Potentials this week and got some valium IV. FINALLY eith an EP they found my focus which they found out is always, well for the right word which I don't know, active or going. Believe me you are very closely watched in either an EEG or VEEG and if you sz? People are in there pronto. I just had a bad aura and had a crowd in there. But if you're worried? Talk to your doctor. They might just reduce your AEDs at first, not take them all the way away (shudder).
Gretchen
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I've found if I walk through my fears? I find courage on the other side. It's that first step that is hard but each concessive one becomes easier as I reach my goal -- Gretchen
Re: Re: Re: Re: Re: Re: How bad is test where u r removed from m
Submitted by stefie on Fri, 2006-08-25 - 22:52
I gotta say it was really fascinating to watch the video (and extremely disturbing too). I still have it. I think I've watched it a total of two times, it really gives me the creeps.
I was never under control with the meds, so to take me off of them was an awful feeling, but even worse was the thought that I might not have enough seizures for the doctors to figure out where my seizures were coming from. Lucky for me they did.
My seizures were very definitely coming from the right temporal lobe. When I had my surgery they took a little over half of it.
I don't think I'd say I'm a rock, for me there was some comfort in knowing what was going on, especially since the doctors tell you so very little. I hate not knowing what's going on.
Re: Re: Re: Re: How bad is test where u r removed from meds & al
Submitted by WendyBendy on Fri, 2006-08-18 - 15:25
I have had 2 MRI's and 2 EEG's and all were normal as far as tumors or cysts. Which is a blessing, I guess. My doctor is to call me when a time is set up for the test. They said it could be a 2 to 3 month wait. I do wonder if I will set everything up from my doctors office and have the test the first time I go or if I will go (Jackson, MS ) there to get it set up and have to wait and worry even longer. Thanks for talking with me! You make me feel better.