decreasing meds

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juanne

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If we are Put on meds to control seizures, how come they then look at weaning people off them when they have been seizure free. Will this not cause the seizures to return? Meds can't cure epilepsy can they? I don't understand.
 
I share your lack of understanding of this. I look forward to getting some replies!
 
Thanks masterjen, it doesn't make sense to me at all. If you are given them to control the risk and they work it would be a big gamble and risk to stop them.
 
It doesn't make sense to me either! My neurologist said to stay on them for a minimum of 18 months/2 years but its totally up to me. Personally I don't think I will feel ready by then. I had 4 years between my first and second seizure with no meds so how can I judge or even risk it!
 
I agree, i don't think i would want to risk it. I never want it to happen again.
 
While I am certainly no expert here :p I will say that when they had me decrease my medication about a month (or two) ago, that is when seizures started coming much much more with me, even though I went back up to the dosage I was at for X number of years. So, I am another here... I don't understand it.
 
I wonder if it depends on the type of seizures one has, how often they had them before going on medication, and/or how often they continued to have them while on medication??
 
That is a good suggestion masterjen, could be! I am curious. I will ask the question when i next see the neurologist x
 
I have read about that happening before cadsgj, which is why i don't understand it.
 
The doc said to me that we would start a decrease and probably be able to stop the meds, in time. I was so excited but then started having T/Cs again. My pharmacist said that decreasing the amount of a med can make it work better, at times. I do not know for sure as there are just too many variables. It frightens me, frankly.
 
OH yes, I am back on a higher dose than before now, of the original med. I am seizure free for a few months and not changing a thing.
 
the main reason is the same as anything - why be on/take too much of/do too much of something if you don't need to be/do?
after a certain length of time (different for everyone w/every drug) that a med works successfully your seizure threshold will start to rise, so after a couple years, if it's looking good and no/very few seizures, a doc will suggest lowering the dose to see how you're actually coping. if you do well, then yay! you aren't on more drugs than you need to be. if the seizures return or increase, then it's proof that your seizure threshold is still fairly low and you need the help of the meds, at the dose you were originally on.
it is completely an issue of trial and error, and not every E sufferer wants to play around. depends on what's more important to you, seizure control or freedom from drugs.
myself, even after i have surgery in three weeks, am opting to stay on one of the three, and my epileptologist agrees. as i have a fair amount of grand mals my safety is greatly at risk, so i'd rather help my threshold than be off all drugs.
 
Well said, QToWNgirl; and safety is my big thing now as well. It sounds like you have awesome healthcare up there in Canada. Down here, I do not trust them. I also found that it is very hard to move to Canada now.
 
Sometimes seizures just stop. The only way you know if yours might have is to drop/stop the meds. As Qtowngirl says, you don't want to be taking AEDs if you don't have to. It's a personal choice as to whether you want to take a gamble. Sometimes it pays off, sometimes it doesn't.
 
Janus said:
Well said, QToWNgirl; and safety is my big thing now as well. It sounds like you have awesome healthcare up there in Canada. Down here, I do not trust them. I also found that it is very hard to move to Canada now.
Click to expand...

it is as far as coverage goes (i could never afford the surgery there :().
However, as with anywhere, there are still bad doctors hanging around. i'm on my third neuro, the other two were assholes. the first was more interested in himself and the second was muslim and had no interest in what i had to say, he wanted my boyfriend there. yeah, when i realized that i walked out halfway through our first mtg (in tears of course) and never went back. bleh.
when you find the right one you know it, and it could be in timbuktoo.
 
I think, not positive about this though, is that if you have stopped having seizures then they want to take you off of the meds or lower the dosages because of the serious side effects that the med might cause and they don't want you to get any of them.
 
It is strange to me because here in the U.S. Most docs seem to be 'pro-perscription drug' way too much. There is a joke about how they always say, "what? oh, we have a pill for that." Everything from kids that are homesick (they will label as 'separation anxiety') and needing more sleep, anything at all. They get a bonus check from 'big pharma' and care more about that than your health.
 
Because the brain is so plastic and unpredictable, there's a chance that it could "learn to behave" after a certain period of complete seizure control on meds, and thus allow someone to taper off and remain seizure-free. The likelihood of remaining seizure-free depends on what kinds of seizures you have, your age when they started, how many seizures you had before and after diagnosis, how responsive they are to medication, and how long they've been controlled. And even then, there's no guarantee.

I think it would be interesting to combine a very slow medication taper with intensive neurofeedback -- at least in that scenario you would be strengthening the brain's "muscles" before fully removing the "cast", and the odds of remaining seizure-free might be higher.
 
Interesting... My son started having CP's in his early 20's. Never had anything show on an EEG they even before placing him on AED's did all kinds of test on his heart thinking it could be that since EEG showed nothing. Heart was good so they put him on an AED based on my issue (mine did show on EEG). He ended up I believe wrkg himself off meds. He was off them for 5 to 8 years. Then one day it showed up again. He had a wreck on his way home from work. He said he had the de javu feeling he had before. Was a good thing he was in a large pickup. He did not hit anyone. Knocked down a tree and ran into a cement wall. He was in hospital for about 5 days. Ran EEG again. He is back on AED (keppra) but still has never had anything show on an EEG.
 
daviscy- that is wild. I am glad he is O.K. I have had EEG readings that are weird also; one time i had a partial during the test and EEg showed nothing. Yet another time I felt fine and seizure free but the EEG showed I needed to take AEDs. Both times i was not on meds at the time.

NAKAMOVA- That is true! I have been seeing lots of science lately about the plasticity of the brain and it is very much so. We'Re just learning about some of this.
 
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