Thank You ALL for sharing your experiences! I began taking Keppra in Aug/Sept 05 for partial-complex-2ndarily generalized seizures (mine began on Thanksgiving '03 - I was 25 - and I've had 3 more in the last 2 years)...anyway, when I noticed my short & long term memory slipping, I asked my neurologist about it.
He told me that Keppra could *not* be affecting my memory, especially since my dose is only on 500 mg (he thinks I should up it to 1000 mg). I flatly refused to 'up' the dose (against his wishes) b/c I suspected Keppra was 'messing w/my mind.' But, even though I thought it was the Keppra I've been afraid it's something else, esp since the dr. said it couldn't be the med.
I've considered all kinds of awful things - do I have a brain tumor? do I have some sort of mental illness? etc. The dr also made me feel like I wasn't really having memory problems. So I tried to document examples when they would happen (misspellings & the fact that for > 10 yrs I knew my bank card #, but all of a sudden I could only remember 4 digits (incorrectly)), however he made me feel like I was crazy for even thinking I was having memory lapses.
However, after reading your posts, I have much less doubt and fear re: my memory loss. It's scary to know what it is (and not knowing whether its permanent), but better than not knowing.
I have an appt in Jan 2006 and was going to bring up the memory loss again. Now, I can actually have some confidence in my experiences(although I probably can't mention where I got it, since he'll discount any non-medical source).
Does anyone know why do doctors try to refute acutal experiences? Also, none of my doctors told me what kind of seizures I was having (besides the fact that they were tonic-clonic). Once I began researching on the web, I self-diagnosed w/partial-complex secondarily generalized (it wasn't very hard to do since my symptoms fit the bill to a T!).
One other question (that I should probably post in another thread but I'm just so excited to have found an outlet for my questions!!!) - my seizures began about 6 months after i started cramping (all over my body) from only slight muscle use (e.g. putting on socks & my foot would cramp, or holding something of medium weight and my hand would cramp). Also, w/in a month after the 1st seizure I developed Reynaud's syndrome (where, b/c of temp change, the blood from your extremities, hands/toes, withdraws towards your bodys core - your finger & toe tips get white & really hurt). Has anyone else had these kinds of 'coincidental' symptoms w/their sz?
I asked my doctor if it's possibly some metabolic or nutrient deficiency thing - he said possibly, but we'd have to run a whole battery of tests & we'd most likely find nothing. I find this pathetic - I'd like to run the tests if it could mean solving or finding out what's causing them.
I don't want to switch drs b/c he's actually the 3rd neur I've had and he's supposed to be good (1 recommendation & he's on some board - I actually have expensive med insurance and he's not cheap). But if I switch again I'm afraid I'll get the 'difficult patient' notation in my medical files. Any suggestions?