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Tegretol/Carbamezapine

Tegretol/Carbamezapine

Hey everyone
I've been on tegretol/carbamezapine in various doses since I was about 15. I am now 27
I've been starting to think more about side effects, dependency and whatnot as I get older. Does anyone else worry about this? Like what the drugs are doing to your body? I still have seizures roughly once every two weeks, maximum is usually 4 a month, but I have started looking into alternative treatments as well, like acupuncture and the keto diet. My neurologist mentioned to me that if I… read more

A MyEpilepsyTeam Member said:

I was on Tegretol then carbamazepine xl for over 20 +yrs. and just taken off after video monitoring, put on Vimpat. The effects of Tegretol/ Carb is bad in the long run. I got db vision memory loss, muscle pain &weakness, horrible stabbing head pain, stomach problems (thought I had IBS D. )
Best of luck to you.

posted almost 5 years ago
A MyEpilepsyTeam Member said:

I was on tegretol for about 9 years. I am now back on dilantin.
I had my daughter with no problem/side effects.
Personally i dont feel like any meds fully work for me. I have been on tegretol, dilantin, lamictal, keppra and one more i cant think of right now.
I have been reading a lot about other ways to deal with the seizures......diet, exercise, acupuncture, etc.
My issues are completely related to my cycle but doctors refuse to accept that. Ive been trying to eat better and look into possible herbs to try.
The side effect issue is a serious concern of mine too.

posted almost 5 years ago
A MyEpilepsyTeam Member said:

I used to be on carbamazepine along with neurontin through all of my pregnancies. My 3 boys were born without birth defects, but my girl was born with anencephaly, a neural tube defect. Carbamazepine could have had a role in this, though there's no way to know if it did for certain. My doctor put me on high doses of folic acid before my 3rd boy to counteract this possible risk. The medicine did control my seizures for quite a few years. After about 15 years though, the doctor changed them both because they weren't controlling my seizures well enough anymore. Good luck! I hope you can get some more direct answers regarding this!

posted almost 5 years ago
A MyEpilepsyTeam Member said:

I was on that medicine and it didn't really work for me but not everyone is alike. So my Dr put me on Lamictal and Topamax. And they've helped me. But like I said we're all not alike. Now the medicine your taking didn't help me one bit. Good Luck I hope I helped you somewhat

posted almost 5 years ago
A MyEpilepsyTeam Member said:

I was advised to iincrease to 600mg morning 800mg in November 2018. It's now March 14 2019. I started having increased seizures from once a month to many more some days having 4. So when I saw my epilepsy nurse she advised me to reduce the morning dose by 200mg. But,
I remembered the time up until 2016 when I lived 3 years seizure free when I was on 200mg morning and 400mg evening.
So, I went back to that amount on January 9th 2019.
I've had one seizure since on 29th January 2019. It's been 9 weeks and one seizure 6 weeks ago and that wasn't a bad one.

posted about 3 years ago
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