Right now I'm on Keppra, 500 mg twice a day. This was prescribed to me about a few months ago after my second seizure. So far it has been working but today I feel weird and earlier I had a partial seizure. Now I have also been under stress and I got only 6 hours of sleep last night, and I was a bit short the other night with 7 hours, and I also have a little cold. I don't know if that could have caused that and how concerned I should be. I was thinking maybe get a full 8 hours tonight and seeing how I feel tomorrow before worrying about it. Should this be what I do?
Does having a partial seizure mean my medication is not working?
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arnie
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Lots of things can lower a person's seizure threshold, so it doesn't necessarily mean that your meds aren't working. Unfortunately, things can also change in your body and brain which can make your meds less effective. I've been on a total of 5 different meds and have never had good control of my partial seizures. (I'm sort of having one right now, actually). I've had anywhere from 100 to probably 400 or more per year for the past 33 years. That's what's called refractory epilepsy, and I hope you don't end up with it. The long-term med use, and the many seizures have started to do more of a number on me, and I'm going to see if a VNS will help cut down on both seizures and meds.
As for what you should do, it seems to make sense that you wait a day or two until things have gotten back to normal, and perhaps then give your neurologist a call, since you haven't been on meds for very long. Also, if you are not already doing it, keep a record of your seizures and even seizure-like feelings, along with a note about what meds you are on, if you're sick, short on sleep, stressed, whatever. That can help you see if there is a pattern and if there are any specific triggers. Best of luck to you. I hope you can get things under control! Carry on!
As for what you should do, it seems to make sense that you wait a day or two until things have gotten back to normal, and perhaps then give your neurologist a call, since you haven't been on meds for very long. Also, if you are not already doing it, keep a record of your seizures and even seizure-like feelings, along with a note about what meds you are on, if you're sick, short on sleep, stressed, whatever. That can help you see if there is a pattern and if there are any specific triggers. Best of luck to you. I hope you can get things under control! Carry on!
lindsayschu2
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In the same boat here Mike--still having occasional seizures a month after adding a new med, wondering if it takes a while for us to 'stabilize' on a new med. Hoping the best for you and that yours go away completely!!!
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How often do you have seizures?
On average I have around 7 a month where I will black out during that I know of. Usually though if no one is there to see it happen I don't know that it did. I have several where I'll just get really goofy feelings during. I have a VNS and I'll use the magnet. If I don't cough during that goofy feeling then I know it's a seizure.
I might have one each week. One or more two days in a row. Or several in one day. I may even go two weeks without having one then start having them. This is pretty much normal for me.
I've been on a ton of different meds and dosages through the years and usually in a few weeks I know if what I'm taking is going to work for me. Stress and lack of sleep are HUGE seizure triggers for me. If any of this is going on I know I'm due to have one at soon. Since these things were happening with you it might be what brought on the seizure. As arnie said I'd wait a few days and see how things are. If they don't get better then I'd call your neuro. If you'd feel better letting him know about the seizure then go ahead a call him now.
arnie - I was diagnosed in 2003. I can't even begin to count how many seizures I had during the day/week and they were very bad ones that I'd always blank out during. I was taking and trying a ton of different meds but nothing was really helping.
I got my first VNS in 2007 and it helped a lot. I am still having seizures too but not as many and not nearly as bad. I've gone from at least 25 (but probably more) to around 7 a month that I black out during - I can live with that. I am still taking meds too, not nearly as many, and it took a while to figure out what the settings and meds were to use with it.
I just got a second one a few weeks ago, battery died in the first one, so I hope things keep going like they were with the first.
Hope if you do get one it works for you.
On average I have around 7 a month where I will black out during that I know of. Usually though if no one is there to see it happen I don't know that it did. I have several where I'll just get really goofy feelings during. I have a VNS and I'll use the magnet. If I don't cough during that goofy feeling then I know it's a seizure.
I might have one each week. One or more two days in a row. Or several in one day. I may even go two weeks without having one then start having them. This is pretty much normal for me.
I've been on a ton of different meds and dosages through the years and usually in a few weeks I know if what I'm taking is going to work for me. Stress and lack of sleep are HUGE seizure triggers for me. If any of this is going on I know I'm due to have one at soon. Since these things were happening with you it might be what brought on the seizure. As arnie said I'd wait a few days and see how things are. If they don't get better then I'd call your neuro. If you'd feel better letting him know about the seizure then go ahead a call him now.
arnie - I was diagnosed in 2003. I can't even begin to count how many seizures I had during the day/week and they were very bad ones that I'd always blank out during. I was taking and trying a ton of different meds but nothing was really helping.
I got my first VNS in 2007 and it helped a lot. I am still having seizures too but not as many and not nearly as bad. I've gone from at least 25 (but probably more) to around 7 a month that I black out during - I can live with that. I am still taking meds too, not nearly as many, and it took a while to figure out what the settings and meds were to use with it.
I just got a second one a few weeks ago, battery died in the first one, so I hope things keep going like they were with the first.
Hope if you do get one it works for you.
arnie
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Thanks Valerie! I appreciate the encouragement on the VNS. My insurance has approved it and on Jan 2nd I will call the surgeon to schedule the implant.
Mike, for what it's worth I found out very recently that seizure meds are one of the very few drugs (antihypertensives and statins are the other ones) where the side-effects can begin creeping up on you 5 or 10 or 15 years after you have begun taking them! The little uncontrolled seizures (simple and complex partial) like Valerie and I were describing, also take their toll on your brain. I'm only 55 and I don't like the thought that my brain is starting to crap out on me both from the seizures and the meds that weren't controlling them anyway! I wish that a neurologist would have told me these things years and years ago, or that I would have found them out for myself. Maybe I would have tried a nonpharmacological intervention sooner. Who knows? Anyway, what's done is done and all I can do is move forward.
Best of luck with to you and keep us posted! Happy New Year!
Mike, for what it's worth I found out very recently that seizure meds are one of the very few drugs (antihypertensives and statins are the other ones) where the side-effects can begin creeping up on you 5 or 10 or 15 years after you have begun taking them! The little uncontrolled seizures (simple and complex partial) like Valerie and I were describing, also take their toll on your brain. I'm only 55 and I don't like the thought that my brain is starting to crap out on me both from the seizures and the meds that weren't controlling them anyway! I wish that a neurologist would have told me these things years and years ago, or that I would have found them out for myself. Maybe I would have tried a nonpharmacological intervention sooner. Who knows? Anyway, what's done is done and all I can do is move forward.
Best of luck with to you and keep us posted! Happy New Year!
N Sperlo
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Thinks change, Mike.
I was on 500 mg of Keppra, now 2000 and 150 mg of Vimpat. Things change and your body may change. Check in with the doctor and see them often until things iron out. If one medicine was working and isn't so well anymore, there will hopefully be an easy fix.
Good luck.
I was on 500 mg of Keppra, now 2000 and 150 mg of Vimpat. Things change and your body may change. Check in with the doctor and see them often until things iron out. If one medicine was working and isn't so well anymore, there will hopefully be an easy fix.
Good luck.
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hi mike
considering that your brain just started seizing a few months ago it's a bit of an unknown in regards to: tracking sz triggers (if any, not everyone has them), doseage and whether it works against those triggers, how often seizures take place etc.
hugs from all of us, we know the beginning ain't much fun. the top three seizure causes are lack of sleep, stress, and alcohol/drugs, so if two of the three are taking place it's quite plausible. this is the time to start writing everything down, daily if you can. how many hours sleep were lost, source of stress and if/if not that's the reason you lost sleep, what you ate, whether you had a drink etc. it doesn't take too long to figure out triggers and patterns, which will be calming for you and help your neuro, the facts are vital.
ideally, seizure meds are meant to defend our seizure threshold, and if one sz pushes itself past the meds, it is not considered the 'ideal' drug or doseage for said person. however, this doesn't apply to everyone b/c a) some have so many szs finding a med that lessens them is their 'ideal', and b) some (such as me) have refractory epilepsy which means meds period don't stave off seizures (we do get lucky sometimes but it's not often due to meds/doseage).
much to figure out yet my dear, best advice is to get all the sleep you can, avoid who/whatever is stress, and write it all down. :hugs: