Posted 11/16/2011 6:42 PM (GMT -7)
First, let me say that I do not have epilepsy - I have CNS Lupus and started manifesting seizures about 2 months ago. Unfortunately for me (but fortunately for them!) there's only one other person in my Lupus forum group who has seizures with her lupus and she's not on Keppra. So my best friend (who does have Epilepsy) suggested I try this forum.
Today marks 4 weeks of Keppra - 1000 mg per day, and let me count the ways I hate it, lol. All whining aside, it has stopped the seizures - no more grand mals, and the absence seizures have gone down in occurrence as the weeks have passed. So that's good. But I was just hoping if someone could tell me about their experience with Keppra and if I can look forward to more progress.
I've kind of gotten over the sleepiness part - it was really bad the first two weeks. I can actually stay awake all day now but it's swung the other way - horrible insommnia. No appetite, which is not good, cause I had lost a massive amount of weight (down to 85 lbs) due to another AI disease. I think the main thing I'm struggling with right now is that I can not take pain medications with the Keppra (and I won't go into all that here, but I have a failed knee replacement that I can't get replaced right now due to a blood clotting problem); I feel absolutely horrible if I try to take both: horribly dizzy, nausea, feeling like I'm not all here. I've tried decreasing the pain meds down to really low levels but it doesn't work. We tried cutting back the Keppra but the seizures started back up. But even without the pain meds I still have that feeling of being dizzy, and just not "all here" that starts about 30minutes after I take my dose of Keppra.
Can anyone help with this? Can you tell me your experiences with keppra and if you think this will pass in time? My neurologist, who I adore, has asked me to hang in there for 2 more weeks to see if the symptoms lessen. He feels that the Keppra is the "cleanest" med out there and is hoping that things are going to improve.
Would appreciate anyy help ya'll can offer, and thanks so much for letting me ramble.