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Old 09-19-2008, 08:05 AM   #1
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Hooray! No more Tegretol!

I just wanted to share my excitement. After 2 months on Lamictal, it's working SO WELL. I only had 3 tiny seizures since I started it. So I finally had my follow-up appointment with my Neuro at Yale yesterday after my VEEG in July, and she made up a schedule for me to wean off the Tegretol. I'm so excited about this. I can't wait to be on only one med (If I'm still doing really well after coming off the Tegretol, she's going to have me wean off the Keppra, too). This is such great news to me, just because I've always been so nervous about being on so many meds, and how there are so many negative long-term effects of Tegretol. I also want to have kids someday, so it will be really great to be on a safer med by the time I'm ready.
Yippee!

 
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Old 09-19-2008, 08:47 AM   #2
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Re: Hooray! No more Tegretol!

Wow, that's terrific news! Thanks so much for sharing! Please keep us posted on how you're doing. Best of luck to you.

 
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Old 09-19-2008, 08:50 AM   #3
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Re: Hooray! No more Tegretol!

Thank you!

 
Old 09-19-2008, 11:13 AM   #4
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Re: Hooray! No more Tegretol!

yay this is great news, Im hoping to wean off keppra and trileptal soon as well, so please keep us posted on your experience. hope i dont sound rude but how old r u now?... I know everything will go well...

 
Old 09-19-2008, 12:34 PM   #5
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Re: Hooray! No more Tegretol!

Quote:
Originally Posted by 030free View Post
hope i dont sound rude but how old r u now?
I don't mind you asking! I'm 26.

 
Old 09-19-2008, 04:58 PM   #6
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Re: Hooray! No more Tegretol!

really so your actually doing good timing with the meds too. Im 27, close to 28 but feel so old when it comes to waitting for these neuro to get you off these meds I dont want to be too old to start a family u know. Anyways this is your time, hope everything goes smooth and keep us posted. Congrats....

 
Old 09-19-2008, 08:20 PM   #7
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Re: Hooray! No more Tegretol!

Well you're still closer than I am to having a family, having a husband and all. I don't even have a boyfriend. but I figure i'm gonna end up married someday, and I definitely want kids, so this is a good time to get onto a safer med.

 
Old 09-21-2008, 06:24 PM   #8
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Talking Re: Hooray! No more Tegretol!

Good for you! We just weaned my son off of topamax, he is doing great. The topamax was actually causing him to have seizures. Every time I dropped him 50mg's he had less seizures. He is also on Lamictal, we give a lot of the credit to this drug. He is also on Keppra 4,000 mg a day. I would love for him to be on only 1 drug. Keep us posted if you drop the Keppra. We have talked about reducing his dose but his nuero likes to go slow also, it has taken 2 months to get him off the wopper dose of topamax that he was on. I am very excited too.

 
Old 09-26-2008, 06:43 PM   #9
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Question Re: Hooray! No more Tegretol!

What are the negative long term effects of Tegretol? I've always tried to find that information.
I've been on Tegretol for 27 years.

 
Old 09-26-2008, 09:09 PM   #10
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Re: Hooray! No more Tegretol!

re last post: it (Teg) has SOME effects on the bone according to the texts, but I've been on it since I was a kid (81) and have not had any problems, never broke a bone in my life amazingly with the dangerous things I have done.

WTG in getting off Teg. I wouldn't mind getting off it, but it seems to be one of the few I have never been able to be transferred off of over all the years with all the med trial and errors they did on me.

Topa is a dangerous one to adjust down. I remember when they titrated me UP the first time I was cross dropping Dilantin (getting off it). That was the only time I had the side effects of Topa with memory blanking out. Until I was at 100mg BID (AM & PM for those that don't speak medical jargon).

I was going to say that a dose of 4000mg of Keppra is considered high depending on the levels. I had problems at that dose. I had high levels at 3000 but no symptoms that I showed at 4000. Even with my blood levels being in the low 60's (at 3000) I was not toxic or having side effects. We still dropped my dose by half a tab (750's) to be safe.

--Travis

 
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