I am on Tegretol XR and lamictal. I've had epilsepsy for almost 20 years now. I've been on tegretol the entire time and lamicatal only half the time. ANYWAY...I want to get off of tegretol. I want children someday (tegretol is one of the seizure meds that is not good for a fetus) and since it's metabolized by the liver I'm paranoid about liver disease later on in life. My doctor wants to take me off of it too. I was on it for GM and then got diagnosed with partial as well 10 years later so they put me on lamictal with my tegretol. I had just went 16 months seizure free but forgot my meds the other day and had one. (partial) I've been free of GM's for years now. I'm scared though! Obviously it would be a slow process that would take a couple of years...but I am deathly afraid of having a seizure. I only have both the GM and partial at night but what if they turn into day seizures?
Anyway...has anyone gona off of Tegretol before? Whats happened? How did you feel? Help! lol

i was on tegretol for about 13 yrs and the i switched to topomax. i started having more seizures on the topomax so ive been switching meds for about 6 monthes and now i just started on depakote. so i guess my transition didnt go that smoothly but my doc said that tegretol doesnt work for the seizures i have. as far as how i felt i felt fine. i never really had any side effects, but i started on it when i was so little that i dont remember not being on tegretol. i didnt notice any changes going off the med, no withdrawal symptoms or anything.

i hope you do ok w/ the change and no additional seizures come.

One time coming off Tegretol/carbamazepine, I got really irritable and grouchy over stupid stuff....am back on it now, and had to taper it very slowly that time I went off of it to go on something else.

So going off Tegretol made you grouchy? I've been on it for so many years who knows how it affects my personality! I talked to my Dr. today.. I'm going to go from 800mg a day to 600mg. I'm a bit nervous, but I know it's time. Hopefully I can just be on one drug (my lamictal) and thats all I'll need.

I was horrible- getting upset at stupid things, but realizing the overreaction at the same time, feeling I was going nuts. I wasn't on that much at the time, and am sensitive to meds in general- others taper off fine....

The Head Neuro at the city hospital in a metro area tried taking me off TegXR and replacing it with Lamictal something like 7 years ago... that gives you time line (Was on Dilantin as well).

To the point... He wanted to reduce at 200mg/week; I objected and asked to go at 100mg/wk. I had been on Teg (tabs first, then XR) since the beginning when I was a child for (let me think!....) 19 years!! So I wanted to go VERY SLOW to avoid a sudden removal.
He ran over my objection and stated 200 would be safe reduction rate. Needless to say it was NOT. I had 2 GM's at my cousins wedding out of state. I called the clinic when I touched the tarmac and the NURSE told me to go back up to my previous dose without even talking to the doc <grin>.

I'd hope you can go VERY slow. 100mg a week; even every OTHER week is MY speed I'd suggest. REMEMBER Teg takes 3 weeks to normalize in levels when adjusting (normally when increasing, but it goes also when reducing).

So SLOW is the safer route. You most likely will have to INCREASE the Lamictal before and or during the Teg reduction. Your Dr should help plan out a schedual for this. You'll need something to pick up the slack of Teg being removed.

As for the Lamictal (there have been Birth related issues with Lamictal I thought?) watch out for the skin rash as you know.

I was on 800/day of Lamictal (400 AM and PM) without problems, but it didn't seem to be working with my system. Levels were NOT showing up on tests, should I say they were way too low for the dose of 800/day.

--Travis

Lamictal is not one of the drugs that Drs are most concerned about with being pregnant, Tegretol is though. Which scares me. I've been on Lamictal for 6 years now and has worked amazingly. I never had the rash or any bad side effects from it. We were supposed to increase Lamictal before reducing Teg, but long story short we didn't. So now we're just going to decrease Teg first. I haven't had a GM in like 3 years and a partial in about 16 months. The Teg was for my GMs but Lamictal is used for them as well. I would prefer not to increase my Lamictal unless I have to. I'm wierd about medicine, I hate taking more than I need to.

We're starting to reduce it 200 mg. I'm supposed to call him in a month or two to make an appointment and see how I'm doing. I've NEVER had a GM awake so if I do start to have seizures, I'm hoping that will hold true and still have them in my sleep. That's my fear, to have a GM awake. I just hope taking me off Teg doesn't do that.