Rachel,
I have a Dr. friend who tells me that she puts people on Keppra
now. But unfortunately everybody has to find the med that works
for them. If one doesn't work --you try another or add something
another.
I take 3 Dilantin Mon, Wed and Fri (because 4 everyday was too
much for me.) I take 4 Dilantin the other days- plus 4 -30 mg
phenabarb every day. I'm been on this for over 20 years. I've
had EP for 47 years -- so of course I was on other meds but I don't
remember what all they were. I remember Peganone-- which I don't
hear anybody taking it-- but when I ask for it on the computer --it
says it is an anti-convulsion med.
When I was diagnosed (DX) -- my Dr. told me that I could go without
szs for 20 years and then I could have one again.
Millie
Hi,
> I actually have only been dealing with this for the past six months but
> Kepra was the first drug that they tried with my husband. He saw 4
> different neuro's in the ER and all agreed that Kepra had the best success
> rate across the board and started him on it before he left the hospital.
> We had a horrible experience with it. He became angry and stayed that way
> all the time....we have been married for 14 years and fought the most that
> we had ever fought in the 4 weeks that he was on the drug. The weird part
> about it is that he didn't even realize that he was angry- he said things
> to me that were so uncharactaristicall
> actually thought he might have some kind of brain damage from the
> seizures!!!.
> making things worse for him....within the first 2 weeks i made a call to
> the Dr. and at first they told us to give his body more time to adjust- we
> waited another week and still no better-they reduced his dose-told us to
> wait another week and still no better so finally she agreed to switch him
> and within 2 days of being off the meds he was much better. They tried
> Depakote but he got a rash so now he is on Dilantin ....makes him feel
> crappy but his mood is better =)
> --- In epilepsy@yahoogroup
>>
>> 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)
>> 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!!!!!!!!
>>
>>
>>
>>
>> [Non-text portions of this message have been removed]
>>
>
>
>
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