Hi Liz,
I know what you're going through with the clusters. I recently had a left temporal lobectomy (Nov 12, 2008), and I haven't had a seizure since. Before the surgery I was having about one cluster per month. I would have a simple partial or complex partial seizure about once every 1 1/2 hours for 2-5 days. I'm still on high dosages b/c I was having tonic clonic seizures from the right temporal lobe too. The meds have good control over the tonic clonics. Anyway, I'm on 3000mg of Keppra daily and 700mg of Tegretol daily. Keppra has worked well for me. It has very few negative side effects.
It's strange that you have a hard time sleeping when you're post ictal. That was all I wanted to do after a seizure and/or cluster of seizures.
Maybe you should ask your neurosurgeon about epilepsy surgery. It worked for me (so far).
Tristin :)
--- On Tue, 7/14/09, Liz Welker <lizard110366@
From: Liz Welker <lizard110366@
Subject: [epilepsy] Brand-new with Keppra questions...
To: epilepsy@yahoogroup
Date: Tuesday, July 14, 2009, 11:03 AM
Hey, everyone. :)
I am a 42 yo mom who has had epi since infancy. For about 1/2-2/3 of my life, I have been on phenobarb, which has always controlled my GMs 100%, thank God (when I was on it), but I also have simple partials (which rarely generalize to GM; haven't in 3 years! :) ). My SPs will cluster from triggers like weather fronts, hormonal yin-yang, or disturbed sleep. Phenobarb, unfortunately, has never controlled them. I started taking magnesium a year and a half ago, and it helps, but it can take the cluster down to about 12 szs from what were as many as 30 or 40 over a period of a day to a day and a half. My post-ictal blahs are generally not as bad as they were prior to starting daily mag, but I just had a bout with a cluster on Saturday, and I have only slept about 3 hours a night since! :(
I know the sleep disruption is a classic manifestation (for me, at least) of these things, but it has never been this long before. I also get a fever and pasty/metallic taste in my mouth with decreased appetite and occasional nausea/vomiting after they end or are ending. The fever can last a couple of days, and the crappy taste in my mouth generally will last 2-3 days. Sleep disruption would usually be only a night or so, but this has been (pardon the French) HOLY HELL. I have hardly slept since!!!
I called my doc (a neursurgeon; I have hydrocephalus) , and for the third time, he suggested I consider Keppra. I have been reading up on it, and I know all drugs can be very good or very bad as well as in-between. (I had a nightmare experience with Tegretol!)
So...I come to you and ask: What are your experiences with it? Good? Bad? Ugly? Awesome?? I want it all. :)
Thanks muchly!
LIZ in RI, where we have SUN--at last!!!!!!!! !
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