TEGRETOL EFFICACY IN TREATMENT OF SEIZURES - RS2304016-AA, RS2298771-CT, RS3812718-CC - Question 1

Have you ever used Tegretol for treatment of seizures and was it effective for you?

No, I don’t have seizures nor have I used Tegratol. Good luck with your research :slight_smile:

Yes, carbamazepine worked for me on persistent “non-epileptic seizures” which closely resemble acute tetany – “claw hand,” tight jaw and facial grimacing, severe muscle spasms, arm jerks, etc. Was completely gobsmacked it worked and never expected it (thus zero as to placebo effect), as no meds have ever worked on those episodic episodes in over 20 years. First few weeks of taking it I had overwhelming side effects (though according to my pharmacist most people have no such thing). Once adapted, it was fine. Since my episodes wax and wane, once they remitted I (carefully!) titrated off of it because why take something hard on my body if I don’t immediately need it? Apparently many people take it successfully for migraines with apparently no side-effect drama.

Tegretol made me stupid, mean, nauseous,my hair fell out, giant rashes and made all of my symptoms much worse. I refused further treatment and fired the fancy Ivy League doctor. It turns out I had a brain tumour. It was right there in the MRI report, but the physician apparently did not read the report. Make sure and read the results of every single test and get the office notes for every single consult. Google what you don’t understand in regards to latin terminology. This seems to me like a pretty big miss for a fancy pants teaching hospital in Massachusetts. I almost died…

I’ve had epilepsy for 43 years, starting when I was 13. Most of that time, my seizures have been controlled through phenobarbital. However, after the birth of my first child, I went through a period of feeling “off”, experiencing odd glitches in my brain. I was afraid it would lead to real seizures so went to a neurologist who convinced me to switch from phenobarbital to tegretol. All was fine for a few months and then suddenly I began having seizures. Went to another neurologist who put me back on phenobarbital, and I’ve been fine for 30 years. FYI - Tegretol can cause birth defects but I’m not sure what the latest info says about that.