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Old 03-03-2013, 05:25 PM   #1
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Would you ever consider going off of your AED's?

I am curious if anyone suffering from epilepsy has tried (under the supervision of their Neurologist/Epitologist) weaning themselves off of their anti-seizure medication/s?

I have been seizure free for 3 yrs now and my Neurologist said once I had hit the 5 yr. mark, he would wean me off of my medication if I decided that was something I wanted to do.

I am on Levetiracetam, 500 mg, twice a day. I forget what it's like not to be on this medication.
I remember it made me quite tired and quite moody for a while. I'm fine now but wondering if I would feel so much better not being on it??

My tonic-clonics were always sporadic to begin with so my Dr. has warned that it might be hard to tell once I am off the medication if I will be in the clear for good.

I want to do it, yet at the same time, I'm afraid. I know someone that passed away from SUDEP, so that is always in the back of my mind.

It's a decision I need to make eventually, a difficult one at that.
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Old 03-14-2013, 06:53 AM   #2
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Re: Would you ever consider going off of your AED's?

Hi, I have been seizure-free (knock on wood) for almost ten years now. My doctor has talked to me about getting off the medicine--but now it is my security. I told him once, when no one drives on the road that I drive on-- Ill get off the medicine .. so he I think he got the picture that I'll always be on it. I also have a three year old that depends on me, she wouldnt know what to do if I had one in front of her-- Its too risky for me, but of course the choice is up to you.
Good luck!

 
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Old 03-14-2013, 08:27 PM   #3
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Re: Would you ever consider going off of your AED's?

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Originally Posted by Donatelife View Post
Hi, I have been seizure-free (knock on wood) for almost ten years now. My doctor has talked to me about getting off the medicine--but now it is my security. I told him once, when no one drives on the road that I drive on-- Ill get off the medicine .. so he I think he got the picture that I'll always be on it. I also have a three year old that depends on me, she wouldnt know what to do if I had one in front of her-- Its too risky for me, but of course the choice is up to you.
Good luck!
Thanks. Congratulations to you on being seizure-free for 10 yrs. !!
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Old 03-15-2013, 05:22 AM   #4
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Re: Would you ever consider going off of your AED's?

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Thanks. Congratulations to you on being seizure-free for 10 yrs. !!
Thanks Nicole, I feel very lucky. Let me know what decision you make!!

 
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Old 03-21-2013, 03:59 PM   #5
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Re: Would you ever consider going off of your AED's?

I was seizure free for 8-9 years and taken off meds. I was also in the midst of a chemical depression due the medication I was on-Phenobarbitol at the time. It was during puberty-age 16. I had been taking the medication for 12 years at the time (4-16).

I was seizure for another 6 months after being taken off the medication. I then had a grand mal seizure over Christmas Break during that school year. I was put back on the same medication & became depressed again. I switched medications & have been fine every since that time.

I'm now on two medication to control my seizures. I have worked off & on as a CSR since I was 22. Some people say that computer screens cause seizures. I started to have a lot more seizures when I was working FT as a CSR. I was staring at the computer screens for hours at a time.

 
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Old 03-21-2013, 05:24 PM   #6
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Re: Would you ever consider going off of your AED's?

Hi Emilyring,

So you were only off of your meds. for 6 months before having a seizure?

I have always wondered if after being on a certain AED for years and years, is it possible for the drug to at some point stop working because the body (brain) gets so used to it and eventually the person has a breakthrough seizure?

I am so curious to know how it feels to be drug-free again with no AED's in my body. I forget how it feels to tell you the truth. At the same time, I know that there is always the risk of having another seizure....and that seizure could be the "big one".

Computer screens also bother me, particularly if I am on the computer when there is low light around me, such as in the evenings. It has never triggered a seizure but many of my simple partial seizures have stemmed from my Occipital lobe (responsible for vision).
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Old 03-25-2013, 09:24 PM   #7
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Re: Would you ever consider going off of your AED's?

I have gone off my meds because I dont like the way they make me feel. I only have simple partials and I've never had a grand mal. I can't work on meds. . They make me forgetful and they seem toxic to my body.

Last edited by yorkielover007; 03-25-2013 at 09:25 PM.

 
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Old 03-26-2013, 06:43 AM   #8
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Re: Would you ever consider going off of your AED's?

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Originally Posted by yorkielover007 View Post
I have gone off my meds because I dont like the way they make me feel. I only have simple partials and I've never had a grand mal. I can't work on meds. . They make me forgetful and they seem toxic to my body.
You have to weigh the pros and cons....though depending on the type of simple partial, they can still be quite debilitating and also dangerous if you drive.

Good luck to you and if you only ever suffer from sp's, you are very lucky.

I think I was having simple partials for years before having my first tonic-clonic. At the time I didn't even know they were simple partials. Only years later after diagnosis and doing research, did I find out they were sp's.
Unfortuantely, my sp's progressed to nocturnal tonic-clonics and I also know someone that passed away from SUDEP.

There is always a lot to consider.....
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Old 03-26-2013, 07:45 AM   #9
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Re: Would you ever consider going off of your AED's?

When they removed me from Tegretol what a difference !! I described it as "a cloud being lifted". My response was much improved, I didn't feel as dampened as I had been before.

It has been over a year since the resection procedure they did for me. Maybe the doc misspoke, maybe I heard him wrong. I thought he said they would attempt to lower (remove) the Lyrica. I'm on 3 different meds for my seizure control. If they could at least lower it I'd be happy.

However, I realize that even though the surgery was successful, I will need to be on some sort of medication still. Wish it was easier to get off medications. I don't think friends/family really understand the effect the drugs can have on our day to day lives.

--Travis

 
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Old 03-26-2013, 05:20 PM   #10
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Re: Would you ever consider going off of your AED's?

To be off of meds and seizure free would be ideal......ah well, wishful thinking (for myself). You never though.
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