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Has Anyone Become Immune To Tegretol Or With Their Medication?

A MyEpilepsyTeam Member asked a question 💭
Wellington, NZ

I have been on Tegretol for 17 years since 2003 a year after my diagnosis with epilepsy, I've noticed over the years that I've had more side effects and seizures than I once did when I first was put on it, my doctors have never changed it. Has anyone else experienced that? Thanks in advance :)

October 23, 2018 (edited)
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A MyEpilepsyTeam Member

Cheryl:
You need to get a copy of what's called a Physcian's Desk Reference or PDR.
Barnes & Noble still has hardcover copies OR go to their website and download it.

Because of my Epilepsy medications I have to know what other medications can interferr
with the Tegretol XR. I'm also a Type II Diabetic & I suffer from Chronic Migraine.

October 24, 2018
A MyEpilepsyTeam Member

I've definitely dealt with that issue too. When I first started tegretol (carbamazepine), I was clear of seizures for a couple years. But after a while, the seizures started showing up more and more until it was clear that tegretol wasn't enough. I'd ask your doctor about adding if not changing completely to a different medication if it seems to be working less, because it definitely got really bad for me. I'm currently working on getting off of tegretol completely and staying on keppra and lamictol instead.

Hope things get better for you! 🙂

October 23, 2018
A MyEpilepsyTeam Member

Emily:
I began taking 600 MG of Tegretol right after I threw my first GrandMAL at age 15 while
getting ready for high school.

I was reaching over my head for the zipper on my sweater when I felt as if someone clasped their hands over my ears~ Couldn't hear, I tried to scream but I made no sound .
Next thing I knew I blacked out ! I'm guessing about 40 minutes later I woke up feeling real strange~ I was missing a piece of my tongue !!! Thought I'd eaten fresh pinapple.

Have been GrandMAL seizure free for thirty two years.

I take 800MG of TEGRETOL XR a day~ 400 MG with breakfast & 400 MG before bed.
No other Epilepsy medication .

October 24, 2018
A MyEpilepsyTeam Member

I take the same medication all I know is that I still have seizures but less... I know that’s if you have epilepsy there’s isn’t a cure but you can get better... talk to your Dr. maybe you’re body just can’t handle your meds...

October 23, 2018
A MyEpilepsyTeam Member

All the best with your results. Keep checking those sodium levels in the future. Stay well.

July 13, 2023

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