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kareterra
carbamazepine withdrawal
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Yay! finished with the withdrawal and am now solely taking the keppra. All the withdrawal symptoms have gone - no more shakiness, no numbness in face, fingers and arms. I was really worried about that - I think i would rather have two or three seizures a year than to be numb all the time.
( have been taking carbamazepine/tegretol/carbatrol with various other combinations for about 16 years with not so good results. Last year, I started Keppra at 1000 mg 2x a day, and have had completely stopped the seizures. The doc and I are thrilled and now I have just been weaned off of the carbatrol, but the reduction has been really hard otherwise. For about 3 days after each reduction, I feel like my blood sugar is really low - i tire easily, shakey, numb in fingertips and around my lips. I have looked and looked and can't find any reason for this, and it does get better over a few days, but was just curious how many others have had to go thru carbamazepine withdrawal... ).
Recent Comments on this Discussion
You really can go through a withdrawal with this medicine?? I am suppossed to start the process of eliminating from my medicine here in the near future and the doctor never told me that. Is that suppossed to be common???
when i asked my doctor about how i was feeling, he kept telling me that i shouldn't notice any difference, but I absolutely HATE that shakey feeling i would get.
I could always tell when i forgot to take my carbamazepine any other day, I could tell if I was even just late taking it most times-- i don't know why i thought this might be different. Just the other day i forgot to take my morning dose of keppra and didn't have a clue that i had forgotten until i looked in my pill case that night.
Karen
That could be due to the fact it works and messes with the amount of gaba in your brain, the chemical that calms you down and can relieve anxiety symptoms. Going off of it would then affect you I believe in such a way. It's like going off of an addictive drug, i've been todl they give you that feeling.
It did for me, back in November of 2004. I made a mistake in a prior post, it was 4 years not 6 off of depakote. Yet I still have the side effects, even to this day.
thanks for the info. what you said makes the most sense - i started at 800 mg a day and only went down 200mg every week. sometimes the tingling and numbness in my arms and fingertips gets annoying (i kept thinking i was getting carpal tunnel syndrome), but it's not really able to keep me from doing what i want to. The only time I find it really bothersome is when I'm trying to do aerobics and the "burn" in my muscles is off the chart. I tried to explain to doc the feeling that i get, but he keeps telling me i shouldn't be noticing any difference. i think HE should take carbamazepine for a while. what sort of effects do you still notice? is there anything you do for them?
That's wonderful about the success with Keppra. But, with the withdrawal of Tegretol...maybe you should go much slower in decreasing the mgs. Possibly this may help. So for how ever much you are taking now maybe stay on this dosage for a couple of weeks before you lower it anymore and then lower it by the smallest amount. Good Luck!
Congradulations!
I was a test patient, in the 70's on Tegretol, I am off it and tried Keppra and it helped my seizures and now I am on test medication similar to Keppra and I have had no seizures. It is called Brivaracetam. It is in the same family as Keppra! No side effect too! I am more awake! More positive! I have been on all seizure medications.
I wish you the best of luck!
Hi -
You posted to a question I had with carbamazepine withdrawal and I checked the information you gave me for brivaracetam. what type of seizures do you have? the information said that it was for myoclonic seizures and mine are partial complex. I would be interested in having an option in the "back of the cupboard" so to speak - I'm not hearing very good things about Keppra, and while it's not bothering me at all now and seizures have been completely controlled, I've read more than once or twice that it can eventually give you the rage even if it doesn't start off that way. I had that with topomax and NEVER want to go there again.
Karen
Hi Karen,
I've taken 800mg of carbamazepine a day for the past 20 years to control my generalized seizures. (I like generic tegretol better than brand name becasue it caused less drowsiness!) Even though my calcium and Vitamon D levels are higher than normal a recent bone density test showed that carbamazepine has given me osteopenia. I'm also slightly anemic and am willing to risk changing meds.
My doctor first wants to try Keppra. He wanted me to start taking 375mg (1/2 the 750mg tablet) in both the AM and PM. I want to take it more slowly and start with 375mg at night for the first week. Add another 375mg per week until I reach 1500mg per day. After taking 1500mg of keppra for 2 weeks I'll then go down to 600mg of tegretol per day. In 2 more weeks switch down to 400mg of tegretol per day....
Does that sound safe enough so I won't get side effects?
Thanks,
John
and by the way - yeah, a 200mg reduction every two weeks should work better than mine did - i went down 200 mg per week. i would just be adjusting to the reduction and then boom, it was time to reduce again. Just be careful. This is a precarious position and you're really going to have to be diligent about your meds as you get off the carbamazepine completely.
Gee, John.
I really couldn't tell ya how you will react to any reduction or increase of your meds - everybody is so different. On topomax, the dr kept repeating that i would lose weight - I GAINED 60 lbs and never ever slept and got so depressed and ANGRY all the time before I finally made him realize that it wasn't for me. I've known people on Keppra that had to quit because it made them enraged or depressed/suicidal but I find myself downright giddy most of the time - but I have to admit that it took about 4 weeks to get to that point. You and I were on the same amount of carbatrol and I too was taking the generic because name brand upset my stomache. i take 1000mg keppra in the morning and 1500 at night to fight nocturnal seizures. I hope you won't get side effects, but if you do, your doctor will know how to handle it. Like I said, my doc took me off the carbamazepine slowly and after each reduction i would feel badly just for a couple of days and then would adjust. I'm personally glad to see that someone has been prescribed Keppra to break since the pharmacy sheet tells you to take them whole. I have to bite mine into small pieces just to swallow it and my doc freaked out when i told him i did that. yes, i still do it. and no, it hasnt' seemed to make a difference to me. Let me know how your change goes. I always thought of carbamazepine as pretty harmless - mostly because i didn't have all that many side effects with it, but it's really a powerhouse. Otherwise, has it helped your seizures much?
karen
After the neurosurgery I had in 1989 carbamazepine kept me seizure free for quite a while. Before the surgery nothing could control the seizures I had every other day. The only time I had a daytime seizure since the surgery is in May of 1996 when I forgot to take carbamazepine that morning. I have nocturnal seizures once every two years or so. In Mass it's legal to drive if you have only nocturnal seizures. The only side effects carbamazepine gave me was a little drowsiness, low blood levels, and osteopenia after many of years. Carbamazepine has been known to limit your body from absorbing calcium channel blockers.
I'm going to play it safe and increase my Keppra by 375mg every week then decrease the carbamazepine by 200mg every 2 weeks.
Are you taking only Keppra? From what I've read it seems as though most people are prescribed Keppra in combination with other meds like Lamictal.
The 1500mg of Keppra my doctor wants to start me on seems like a small amount compared to what others are taking.
John-
Yes. I am only taking Keppra now and you're right - most times it's prescribed in conjunction with other meds (I'm not even sure that it's approved for monotherapy) but so far so good. I've just been taking it since January and have zero seizures since I started it. Since I have nocturnals like you, they put me on 1000 in the a.m. and 1500 in the p.m. it WAS 1000 2x a day, but when the carbamazepine went away, the dr. was adamant about raising it. no problem. i never had all that good of luck with carbamazepine - but maybe i had better luck than i realized. i was having about 2 seizures a month. the only surgery i ever had was VNS which didn't work at ALL. It's even been turned off since March. we have the same law here in Texas if you have night seizures. That's where I really have to appreciate the luck of no daytime seizures. I used to have them, and they were pretty scary but I haven't had one in the day for 6 years or so. when you had seizures pre-surgery, were they also at night?
Karen
Hi Karen,
Before the neurosurgery I never had a nocturnal seizure. I only had complex partial seizures during the day. These seizures were triggered from the right tempo lobe. The neurosurgery I had was in the right temporal lobe and it did eliminate those complex partial seizures.
The neurologists recently told me that before the nuerosurgery they did see activity in the left side of my brain also. I had a week long EEG with electrode bars placed in my tempo lobes before the surgery.
The generalized seizures I have now are triggered from the left side of my brain. I asked my neurologists if we could operate again but he said you cannot have surgery performed on both sides.
Oh well. Once having uncontrollable complex partial seizures every other day, I can live with having generalized nocturnal seizures every other year. Who knows, maybe Keppra will even control these nocurnal seizures?