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#21
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| I think you should try the sleep study/long-term video EEG despite your misgivings. If you are seeking diagnosis, it's best to use the tools at hand. I know it seems really hard, but the information can be very helpful. The between-seizure symptoms you mention are specific to a number of different disorders, so a diagnosis of a pituitary tumor may be jumping the gun. Bring it up to your doctor, and she will schedule an MRI if it seems indicated. |
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elizzza811 (03-11-2011) | ||
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#22
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elizzza811 (03-11-2011) | ||
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#23
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| So you're suggesting I stay in the hospital a month, possibly longer, so that I can have the video EEG?...sorry, not gonna happen... First, my doctor said she wouldn't keep me in the hospital that long. And today is March 11th...my last seizure was February 16th...do the math. If I had been in the hospital a week or even two, my video EEG wouldn't have shown anything, and I kind of have a life to live here. Why isn't the fact that I crashed my car, and my seizures were witnessed by ambulance personnel reason enough to start me on seizure meds? Why do they need more 'proof' when they know complex partials don't always show up? This seizure stuff proof is even more horrific than trying to get my Lyme Disease diagnosed. |
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#24
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| I would definitely seek a second opinion. My child was put on meds despite having his most recent EEG come back "normal." The doctor put him on meds because he one previous abnormal EEG and he hospital staff reported seizure activity as well as us reporting activity. He tends to go two weeks or more between seizure incidents, and they mentioned that if the MRI comes back ok (it's scheduled for next week) that they might do a "take home" EEG of some kind that would last over an extended period of time. Perhaps that would be an option for you? |
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elizzza811 (03-13-2011) | ||
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#25
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| Thing is I had a 24-hour ambulatory EEG already, and it came back normal. And I asked my neurologist how long the longest ambulatory EEG she could order would last, and she said 72 hours was the longest she could order. I'm bummed! No seizures still since February 16th, still, so that makes it 25 days without a seizure...so even 3 weeks in the hospital would have shown zip. |
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#26
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| Look on the bright side -- no seizures for 25 days. That's great! |
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elizzza811 (03-14-2011) | ||
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#27
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| Maybe, but I have a feeling I'm not going to get my driver's license back until I prove one of 2 things... 1) I'm not having seizures. 2) I'm having seizures, but they're controlled on meds. Not good... And if #1 is ever 'proven', I won't ever feel comfortable driving again, because deep down I know it was a complex partial that caused me to crash...and that wasn't the first 'episode' I had behind the wheel either. I was just lucky the other times. |
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#28
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| I wish I had some advice for you, I know it's frustrating. *hugs* |
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elizzza811 (03-18-2011) | ||
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#29
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| Thanks...I finally had several seizures this past Wednesday, March 16th...so basically it took 28 days for me to seizure this time. So I don't see how a video EEG would ever work unless the kept me in the hospital for a month, possibly longer? The shortest span between 'seizures days' (since realizing these were seizures and charting them) seems to be 9 days, while the longest so far has been 37 days. |
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