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  • Definitely confused and frustrated

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    Old 03-08-2004, 10:36 AM   #1
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    mandiyew's Avatar
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    Definitely confused and frustrated

    Spent 6 days in hospital courtesy of status. It sucked. Home now though, but still having seizures almost every day. So frustrating... Had EEG done recently-they always are interpreted as normal, but I have to wonder how normal is it that I am now having difficulty walking and my vision is all blurry. Seizures always come when I get really tired. Had a doc try to tell me last night they were pseudos. Uh, I think not, you don't be controlled for two years on a med (switched due to tolerance to Depakote), then when they start messing around with the meds, you start having seizures again...seem a little strange to you. It's not like I can go, uh, my med levels are low, I think I'm gonna seize today. That's retarded. Anyhow, this was the EEG summary...have not seen epi yet. Hoping to do that the 18th.

    "There is a 9 hz posterior alpha rhythm while the patient was awake with voltage range of 50-70 mv. There is also a moderate to large amount of 5-7 hz semirhythmic moderate amplitude theta frequencies noted in bilateral hemispheres. There is a small amount of low amplitude fast activity in the anterior derivations. Deuring sleep, there was diffuse, generalized background slowing, and there were symmetric sleep spindles noted. No focal epiletogenic abnormalities or focal asymmetries were identified. Photic stimulation produced symmetric driving responses. This EEG is probably normal, but absence of epileptiform activity does not exclude a seizure disorder. Increase in the background slow activity might be representative of a drug effect or reactive state of the patient. Clinical correlation is advised"

    Got put on Dilantin 500 and Tegretol 800. Also, the psych there had the nerve to say I was depressed. Wouldn't you be if you were in there on your birthday? They have never caught a sz yet on EEG, so they cannot definitively say it is or isn't pseudos, but my best guess is no. They progress the same way every time, and I have the same type of aura every time. Pseudos don't do that. Also, you just don't pee yourself with pseudos. I know this 'cause I'm a medic as well. Currently not working though due to all this -am inactive. But will be once everything is straightened out, but can bilateral mean there is more than one focus? So I have been told. Anyhow, keep praying and I'll keep kickin! Later.

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    Old 03-08-2004, 02:29 PM   #2
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    Re: Definitely confused and frustrated

    I am so sorry you are having no luck with the doctors. We are on this same road with my son! How can you get the doctors to listen to their own speel that a normal EEG does not mean there is no epilepsy, it means no seizures were going on right then. You are right that Psuedos do not have the enuresis problems. Often Frontal Lobe epilepsy is harder to detect on EEG.
    mom of 2 teens who have battled seiuzres.

    Old 03-08-2004, 05:06 PM   #3
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    Re: Definitely confused and frustrated

    Hey Mandy, I also seem to get seizures or seizures sensations when I am tired. Usually if I go shopping and walk around alot. My vision gets blurry when i am tired. I also seem to have an intolerance to caffeine and chocolate.

    I too am completely normal with good blood results, except that every once in a while I fall to the ground and start twitching.

    Oh also I seem to have an intolerance to high pitched noises and vibrating sounds.

    I have had seizures since October 30 2003.

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