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

Fri, 08/18/2006 - 14:49
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: How bad is test where u r removed from meds & allowed to sei

Submitted by stefie on Fri, 2006-08-18 - 15:00
I've had this test. It's called a VEEG (Video EEG) and they take you off meds to induce the seizures so they can record your brain activity and hopefully find the location of the seizure activity in your brain. It's called a video eeg because they will be videotaping you 24 hrs a day for several days (mine was 5 days long). Let's just say I wasn't exactly the best or most cooperative patient when I had this test done. Five days of being confined to a bed (you are not allowed out of bed at all except to use the bathroom and then only with assistance- I never have listened well..). I think a lot of it for me was the fact that I was trying so hard to not have seizures that the idea of going off meds to have them on purpose was very disturbing. It's not a pleasant test but take some books and things to do (they won't allow you to have anything you can hurt yourself on, so even pens and pencils can be off limits at times) and try to make the best of it. I still have my video (I requested a copy) and it's chilling to see myself from an outside perspective when seizing... Good luck and I hope they find your sz source relatively quickly. stef

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

Submitted by WendyBendy on Fri, 2006-08-18 - 15:07
thanks Stefie. Were they able to locate the origin of your seizures? When the doctor first told me this, I started crying and my husband got upset with me because I was.I told him I am having a hard time dealing with the fact that I AM going to have seizures...and I CANNOT control my body. Its a very scary thing, as you know all too well. I guess anyone who has never experienced it could NEVER fully understand. Thank you for you time!

Re: Re: Re: How bad is test where u r removed from meds & allowe

Submitted by stefie on Fri, 2006-08-18 - 15:14
So true Wendy. Anyone who has not experienced having a seizure first hand cannot understand what it's like (and that's with ANY kind of seizure small or otherwise). I was lucky, they were able to find the location of my seizures (the focus they call it) in only 5 days. I guess 7 days isn't too long to expect to be there. My seizures were being caused by a brain tumor so in that sense I am "lucky" to have had a physical cause of my e. Do you know if you have a tumor or cyst on the brain that could be causing your sz? The test is not fun, but you will be well cared for, it's more frightening than anything (knowing you're going to seize but not knowing when or how). Matter of fact it took several days before I had any major seizure activity and I was starting to get scared that after all that time I wasn't going to have any seizures. I finally had 11 in 3 days and they finally forced me to take Ativan to control them so I didn't go status. Funny thing is, I was really resistant to taking the Ativan as I didn't want it to stop and have them not have enough information. If you get to that point they will give you an IV tap and make you keep it in case you need the Ativan. When will you have your test?

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