going off of meds!

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acpollard2010

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my dr. started weening me off keppra a couple weeks ago and i have decided i know its not probably the best idea but of going off all of them they don't seem to be working thought it was withdrawals til i had tonic/clonic in the shower and then a bunch of petit mals this morning.im sick of neurologists and family telling me i need these chemicals to keep me alive in addition my wife says she cant handle it if i go off my meds.So to hell with the world is how i feel i have tried to remain positive only people who have been by me are on this site but wont be happy if anybody reads this.
 
Hey acp, do you have a plan in place for what happens when you are completely med-free? I know the medications suck, but it's important to keep thinking about ways to reduce the seizures and/or minimize their effect on your life. Don't give up!

Any chance you can try neurofeedback or is that out of the question? How about taking another look at your metabolism and nutrients. If nothing else, consider committing to some regular stress-reduction practices.

Be well!
Nakamova
 
acpollard2010

I think you should take it easy for a few minuets. I know how you feel, so take it easy. You have got to give your wife a little bit of credit, she has gone through this with you, one day at a time. That is all that can be asked of you. I think some or a lot of the problem could be the withdrawal. Keppra is not easy come off, none are but some are harder than others. Believe me none of us want those chemicals in our body and they do not keep us alive. Believe it or not one of the most important things is Love, and you have your wife, like me. So give yourself a chance first.
 
looking into feedback but my plan is to just take my prn if i have seizure nothing else and i take this liqiud drink that a crap load of vitamins and minerals in it.
 
I know how you feel, they told me to discontinue my keppra. They didn't think it was going to help, because they could not find E in my EEG. As expected, they are about to change that AGAIN. As I have had seizures again. Before I was doing fairly well. So who knows what they want to do next. I am pretty sick of the back and forth. Don't let this all get you down. It seems to be a pretty consistent thing for many on here.
 
ya it didnt workout at all the way i wanted it turns out my body does need these drugs maybe not to live but to function u know answer questions stand up right those type of things don't think i will do that again i was just so sick of all the drugs thought it might be time for a change that isnt now.couldnt even answer my name it was kind of crazy
 
I hear ya there acpollard. I was on nothing for awhile and I did really badly. Simple tasks were overwhelming. It just is never a good feeling, taking something to just, "get by." I think that is what make so many of us want off of the drugs. Or at least a hope for things with less nasty side affects.
 
ACPollard -- were you weaning off all your drugs at once, and how fast did you wean?

It's usually best to just wean one drug at a time, and some drugs are really hard to get off, especially if you're at a higher dose or have been on them a while. It took us 6 months to wean Jon off Depakote (Valproic Acid), but he didn't have any breakthrough seizures during that time, thank God.

I'm not too keen on the drugs either -- Jon recently had to go back on meds after being off them for about 7 months -- he did really well at first, but then started having seizures again when off the drugs. Now he's back on drugs and still having seizures. But not the really bad scary tonic clonics.
 
well i take keppra 3000 mgs, topamax 400mgs, lamictal 600mgs, phenobarbitol 100mgs . tried to do it all in one didn't work now im back to what my and my epileptologists started the weening of keppra he doesn't know about the last 2days
 
Slow tapering in small increments -- it's really the way to go acp. Even if the glacial pace is frustrating, it can help minimize withdrawal seizures and side effects. Good luck, I hope you can eventually shuck them all. Safely.
 
Jeez! That's a buttload of meds. Sometimes I wonder what doctors are thinking. Do they give you seizure control?

Anyway, by all means, follow your epileptologists' advice on the wean. One drug at a time, and slowly.
 
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