Hi Kelly,
I have one simple question for you. Why decrease your dosage if you aren't seizure free?
Yes, you are having less seizures now than before surgery which is great but still, your seizures aren't under control. Why decease the dosage?
As you know, I had a LTL, just hit 4 1/2 years since surgery and still seizure free (giant smile). Drs. suggested decreasing my dosage but I said no, I don't want to. My reason for that is I'm not cured of epilepsy, and, seizure can come back. So, I want to stay on my meds. as back up in case a seizure try's to develop. Call me crazy but I know enough people who's seizures have come back years after surgery, one friend 10 years after surgery. So, no way will I decrease my meds because of how much my life has changed in positive ways since surgery.
So, like I said, why decrease your dosage if you aren't seizure free? Yes, less seizures, not seizure free.
By the way, I'm on Keppra and Trileptal.
If you would like to email me or talk on the phone with me about it, please let me know, ok? Take care, keep a smile on your face!
Steve
--- In epilepsy@yahoogroups.com, Kelly Porter <kellyporter@...> wrote:
>
> I have and appointment with my epileptologist in June, and I want to
> bring this up to her. I would like input from those of you who are post
> surgery and have gone of off, or reduced, your meds.
>
> A little background, I am just over 3 years post surgery, and still
> having an average of 1 mild complex partial a week. Sometimes I have 2
> in a few days, sometimes I go 10 days without one. Before surgery I was
> having 3-6 a day on 3 meds. As of last June I was on 3 meds still, and
> we dropped topomax from that list. I am now on Trileptal and lyrica.
> The Lyrica also helps with ongoing pain issues. When I went off the
> topomax my seizure activity changed very little, but the drop in side
> effects was amazing!!!
>
> I now wonder if it would not be worth trying to go off of, or at least
> reducing, the trileptal. I am on 450mg twice daily. I also take 50mg
> lyrica twice daily. I want to stay on Lyrica because it was prescribed
> only in part for seizure activity, but mainly for pain issues. Dropping
> the trileptal makes me nervous in some ways though. On occasion I will
> miss a dose of my meds, which I take together twice a day. I usually
> realize I have missed a dose because I will have strange symptoms. For
> example the feeling my environment is moving when it is me moving, like
> my head shaking. My hands will shake more as well. Do you think this
> is seizure related, or withdrawal related from missing a dose? Would
> like your input to consider.
>
> Kelly
>
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