Definition of "Well Controlled Seizures"

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brydy23

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Hi all,

I was wondering what you all consider the definition of well controlled seizures. I've never really gotten a clear answer from my neurologist when asking this question, and I haven't been put at ease because of this. When I first heard of SUDEP it created anxiety. and I still have it, because I pretty much have my complex partial seizures every day. That being said, they only happen in the morning,lasting a few seconds, and I go about my day without one happening again. I consider that well controlled but I wanted your thoughts on your own situation and what you may consider mine. Any input would be appreciated!

Thanks guys.
 
morning brydy,
tbh i don't consider a partial every morning well-controlled, unless before that med/combo of meds you were having multiple a day, then that would be more 'controlled' for your situation. some with multiple a day, getting down to one or two is the best they can achieve. is that the case?
i have a few grand mals a year, complex partials here and there, and simple partials every few days. neither my gp or epileptologist considered this controlled so i was put in the investigation unit for 17 days. there had already been something there but they confirmed a lesion.
what tests have you been through? positive? negative?
 
qtowngirl,

thanks for the feedback. I've been on medication, and been reduced to taking onfi and trileptal, mostly low doses and my seizures don't really affect my life much except for not being able to drive. When I miss medication, my seizures are more severe and I have the tendency to have nocturnal seizures. So I would say my medication has lessened the frequency and severity. I've gotten pretty much positive feedback from my neurologists but again, they say that the only real option left for me is surgery if I want the possibility of being seizure free. So I really don't know if I would consider them controlled or not, but they are to a certain extent to where they aren't ruining my life.
 
were they considerably worse before the meds?
 
To an extent, yes. I would have severe seizures more frequently than I do now. This was before I started taking Onfi. I could write pages about my adventures with that medication.
 
I'd say well controlled would be very few tcs and a couple of partials a month.. I'd class myself as moderately well controlled. I have a tc every 3-5 weeks, and sps almost daily. Still doesn't affect my life that much, well maybe I think that because I've never known anything else..
 
Yeah my neurologist doesn't seem to think I'm well controlled with my simple partials... I was having a LOT right after my last T/C, and the medications decreased them... I still get small instances of deja vu a few times a week, and maybe a little bit more a few times a month, but he doesn't like it nonetheless. I guess yeah... well-controlled would be something where you probably just wouldn't really notice much?
 
I think well-controlled means rare in the case of partials, and never for tonic-clonics.
 
I think well-controlled means rare in the case of partials, and never for tonic-clonics.

That sounds like a good definition. In my case I think that the best control I can get is an average of about 300 partials per year. I've been on a number of different meds and have troubles with the side-effects being worse than the seizures. I've only had maybe 7 partials this whole month though!

Cheers!
 
i'm with ya arn about the yearly number. looks like i got ya beat this month tho with 10! :eek:
 
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