Hi everyone!

[sanjumadhav]

Hi,
I am 43, and have been on treatment for epilepsy since I was 8. I've been seizure free for about 9 years now, but have been told by the doctors that I cannot think of withdrawing my medication.
I feel that the long term medication is beginning to tell on me by way of certain side effects such as sluggishness, forgetfulness and other symptoms similar to those shown in adult ADHD.
I'm on a daily dose of 800 mg of carbamazepine.
Thanks
Sanjeev

[survivor]

Hello wecome!
Glad to know that Indians are also coming here and now will gain a lot from this site. 35 years of sufferings, seems to be lot but good that u are seizure free from 9 golden years. As far as side affects are related- Rahi manva dhuk ki chinta kyun satati hai, dukh to apna sathi hai!!

[lovemyladybug]

welcome to CWE ! great to hear your seizures are doing good , not so great about the side effects ( those are horrible no matter where you are ) i hope the doctors can find a solution for you SOON !

[davidmc]

Hi sanjumadhav.
Is there a possibility of changing to a different anti-epileptic drug if the side effects are intolerable?

[Nakamova]

Hi sanjumadhav, welcome to CWE!

Since you have been seizure-free for 9 years, perhaps you could back off of your dose slightly to see if that helps with side effects, and to see how you feel overall. Remember, the doctors work for you, not the other way around, so if you feel it's time for a change don't be afraid to speak up or get a second opinion.

Best,
Nakamova

[sanjumadhav]

Thanks, but I have tried weaning off the medication and that is what resulted in my last seizure. I have spoken to various doctors about changing, but right now, their attitude is 'if it ain't broken, don't fix it'! I have another appointment with the doctor coming up tomorrow, let's see how that goes.

[Nakamova]

I wasn't suggesting weaning off altogether, just slightly reducing the dose -- or is even that problematic?

I am always hopeful that I can go med-free, but haven't had success in the past -- like you, I've ended up having a seizure. I'm currently 3 1/2 years seizure-free, so I'm thinking about trying a taper again, but this time I may try neurofeedback first, in the hopes that I can train and strengthen my brain. I don't know if neurofeedback's an option for you, but you might want to look into it.

[sanjumadhav]

I did not reach a stage where I was able to go off the medication totally. there was about a 60% reduction in dosage over about 4 years when the seziure came on. This was in 2000. The medicine was then stepped up but followed by another seizure in 2002. That has been the last one so far. I guess, I've also been a tad apprehensive about trying to step down as well!

[Nakamova]

I definitely understand your apprehension! And it can be tough having to weigh the security of being seizure-free against cognitive side effects. let us know how your appointment goes tomorrow.

[momofthree]

This probably won't help you much but my son's doctor always says that the goal is "no seizures, no side effects" anything less than that is not acceptable. Good luck to you.