Re: [epilepsy] Inpatient Video/EEG Monitoring

 

I would go see another neurolgoist and FAST!  I know I was hallucinating and experiencing weird behavior while on Depakote but they say its common with seizures so this doctor is SOOO WRONG - try Googling hallucinations during epileptic seizures and how to make the symptoms subside.

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From: Ken Wallace <ken@faithandken.com>
To: Epilepsy Group <epilepsy@yahoogroups.com>
Sent: Wednesday, October 19, 2011 12:00 PM
Subject: [epilepsy] Inpatient Video/EEG Monitoring

 

My wife just completed 7 days in the Emory University Video/EEG monitoring
unit. Of course NO seizures. Even when dropping her Keppra and Trileptal
doses, depriving her of sleep and flashing lights in her face. Nada!

She did experience a brand-new symptom ‹ hallucinations. She was having
real, detailed conversations with people who were not there, she believed
she was writing a script for the Avengers movie and was worried about some
kids who were kidnapped by Russians. Her eyes were fluttering any time she
closed them, she would twitch here and there and sometimes type on a
computer that wasn't there. But nothing showed on the EEG that indicated
seizures.

This did NOT seem to phase the neurologists (since they were not seizures).

When they discharged her, they decided to keep her off the Trileptal (was at
450 mg am and 600 mg pm) and they cut her Keppra in half (to 1,000 mg twice
per day). I explained that we didn't start with those doses, but we worked
up to them, but the doctor thought it was too much. Now I worry about what
will happen moving forward.

We got home Monday night. Yesterday she could not get out of bed and I heard
some of the fuzzy speech and confusion that I hoped the doctors would see.
She is still confused today. Today she's feeling "out-of-body" and confused.
They did recommend her for a complete neuropsychological work-up, but that
won't happen right away.

The problem is, I don't know what doctor to call. If it's not epilepsy ‹ I
can't call her epileptologist (even though as I type this I am on hold with
the office).

Am I the only one who has seen this type of thing or had these experience?

Thanks!

Ken

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