Carbamazepine/Tegretol/Carbatrol

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Brent

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Hi All,

I've been on Keppra for years, but recently started on Carbatrol (aka carbamazepine, aka Tegretol). It's been incredibly effective, and until I got on the full dosage, the side effects were negligible. However, I started on the full dosage a few days ago and the drowsiness is pretty much unmanageable. I just lay around all day and sleep. The dizziness and balance problems are bad but manageable.

I went through similar dizziness at first with Keppra, but it went away. I'm wondering if others have gone through similar sleepiness with carbamazepine, and if it went away.

Of course, I'm going to call my epileptologist, but I was wondering what others have experienced.
 
I've been on it for a long time & it used to be one of the side-effects for me. I always hated mornings because it was so hard to get out of bed & took most the morning before I mentally woke up.

That started to lessen after being on it for years and for about 20 years it wasn't so bad but recently I'm fighting to get up in the morning again.
 
I was on Carbatrol and Keppra together for over 12 years. I remember it being the same way at first. feeling tired all the time, and getting dizzy. But as the time went on, my body adjusted and I got use to it. In March of this year, I just had my first VEEG done, and because I didnt have a grand mal seizure, they only put me back on Keppra and took me off of Carbatrol. Since then, ive lost 20lbs. That was about the only side effect I didnt like about it.
 
Thanks guys.

Yeah, it's exactly as you describe. Getting up in the morning is like crawling out of quicksand. Fortunately, caffeine isn't a problem for me, so a cup of tea helps get things moving. I'm also having a continuous headache suddenly. Not sure if that is related, but I'll mention it when it talk to my neurologist today.

Cheers.
 
I had headaches all the time too when I was on carbatrol and keppra. Now when I started seeing the nuerologist Im now seeing, (november 2010) He said what he thought caused my headaches was the Keppra. So he switched me over to the Keppra XR. Within a week they were gone. I am assuming he was right, since at the time I was also on Carbatrol, and the headaches were gone, even though I was still on it. But yeah, I would def mention it to your dr and see if they can help.
 
Tegretol has made me so clumsy and drowsy and tired my GP is weaning me off of them. I took 800mg until I saw GP today, now I'm on 600mg- she intends to decrease dosage by 100mg each month. I am also on Clonazepam 5mg and quetiapine 500mg. Thing is, I feel it is the tegretol that stops the convulsive fits so after a couple of months without the convulsive fits I fear that they will return. Will have to wait and see!
xx
 
Yeah, that's the thing with me. Keppra hasn't done much, but Carbatrol has stopped my seizures entirely - or at least the combination has. I'm on Keppra+Carbatrol right now and have gone from about 7 partial seizures per week to almost zero and I just got up to maximum dosage a few days ago. My generalized seizures these days happen about every 4 weeks, so it's still too early to tell how much these are impacted since it's only been 4.5 weeks since my last one.
 
I'm also having a continuous headache suddenly. Not sure if that is related, but I'll mention it when it talk to my neurologist today.

Something a neurologist told me a long time ago is that if the headache is a constant pain or pressure, rather than a throbbing one then it is probably neurologically related.

Remember some side-effects do subside after a while so I'd give it some time first, especially if it's working.

Let us know how things go at the neuros.
 
Hi Brent--You could also ask your doc about oxcarbazepine, which is chemically very similar to carbamazepine but tends to have fewer side effects. I can't post links yet, but the info is easy to find.

For my own part, I'm on both ox and Keppra, plus depakote, and can scarcely do anything but sleep. However, I've been on Keppra just a month, so I'm hoping that will improve.
 
Thanks Violetopia. This is actually one med that we discussed. He said that it wasn't usually as effective for my type of seizures, but that, if Carbatrol didn't work, we could eventually rotate onto oxcarbazepine.
 
I Remember...

I felt DRUGGED.... my dose was split between AM and PM The doc said take 600MG AM and 400 PM. We switched the doses and Voila....no more walking down the stairs when I was sleeping.....
 
Yeah,Tegratol makes me sleepy,but it works so thats good enough for me,im on 800mg a day plus 2000mg Epilim Chrono.We tried just Epilim and it was a bit of a disastour seizure wise so im back on both.My nuero and epioligist nurse have said we can think about reducing Epilim next appointment,ill just have to wait and see will they keep their words.
 
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