Questions about Tegretol

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R

rejoicing in hope

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Hi Everyone,
I am brand new to this group and I am hoping to have great conversations with others dealing with Epilepsy.
My question is I have been on Tegretol for about 20 years - it helps to control my grand mal seizures and I am VERY sensitive and resistant to almost every medicine on the planet - it is a miracle that I have been able to take it this long. (I am also taking Felbotol.) For the past 4 years I have been dealing with severe pain in my body, it has gotten worse over time and is pretty much 24/7. I have seen many doc's and had lots of testing done as well. I just recently found out that the Tegretol has more than likely casued mixed connective tissue disorder - the doc said this was a rare problem with this med but it does happen. Has anyone else ever heard of this? I have also had a lot of trouble with my vitamin D levels, arthritis, osteoporosis, and thyroid - all side:yippee: effects from the tegretol. We are just now finding all of these things out and I have really been struggling with all. I just wonder what anyone else may have experienced or know about this. Thank you! - Roxanne
 
Hi Roxanne, welcome to CWE!

It's a shame that we end up being the guinea pigs for the long-term side effects of the anti-seizure meds. I'm sorry that you are dealing with the pain and other problems. I don't have any experience with Tegretol -- I'm currently on Lamictal -- but my bones were found to be a bit soft during a recent surgery, so I'm wondering what else may be in store...

We have plenty of members who have tried Tegretol, so they should chime in soon.

Best.
Nakamova
 
Hi! Welcome to CWE!
I like your screenname!
Sorry I don't really have any answers to your questions, but I wanted to welcome you.
 
Hi! I've been on tegretol one year and I am experiencing pain in the joints - fingers, thumbs (dislocated left thumb many times), knees and ankles. Could be my age (51) but one wonders what issues are related to medication.
 
Thank you all so much for welcoming me! And thanks for your feedback! I am sure that it what it is due to the research I have done and I will more than likely get off the tegretol. We will all just keep on going one day at a time. God bless you all!
 
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