I know what you mean when it feels like your body's electical system is gone! Ive had EEG's done many times through out my life, but never a Video EEG, til the beginning of this year. Ive never had been taken off any medications for my seizures cold turkey either! So those two together, were a first for me! Once the seizures started, I felt the same way! It felt like my body was being fried to death everytime a seizure would happen. I would always try my best to explain in to my mom, (she was there the whole time with me during the VEEG process) but it was so hard to get the right words to explain to her exacly what it was I was being able to feel during a seizure. But its like a electic feeling going through out your body... its so weird. Feeling so drained and tired after it was over, I hated that feeling! I never again want to go through that again! But my doctor wants to try to get me off of Keppra next year! It would be amazing to get off Keppra, and be seizure free. But my gut is telling me that its going to be a "Not so good road" to go down. Im trying not to even think about that. I see my neurologist again in August of next year, thats if seizures are well controlled and things go good before then.
Yeah tomorrow I have my appointment with the cardiologist. Over time, since Ive stopped taking that medication for gerd, Ive felt so much better. I think alot of the "fast heart beats" was from too much medications. Especially that Hydroco stuff. So Im not too nervous about what will take place tomorrow. I have all my papers in order, ready to let them know whats been going on since all this has began. Hopefully things will check out good, and I can get with the gerd dr and they can run some tests to see if thats the main problem!
Oh by the way, I will check my mom about the levels of what my carbatrol was. I know I had my last blood level drawn with the Keppra and Carbatrol 2 or 3 years ago. It was with the prior neurologist I was seeing. I'll check with her to see if she recalls what my levels were when I was on it, and let you know. I was taking 1200 mgs a day... (2) 300mg tablets in the morning, and (2) 300mg tablets at night, along with the Keppra.
Have you been on the Carbatrol long? I know when I first started, I could tell that my personality had changed... well I shouldnt say personality, but with my temper and all, It was like I was on edge with things alot. Once I got off of it, I felt so much more relaxed. I even lost 20lbs! Everyone noticed a huge difference in me. I was on it for over 12 years and my dr didnt want to leave me on it for a long period of time due to it causing alot of bone marrow problems if on it for a long period of time. If I had grand mal seizures during my VEEG, my dr would have put me on another add on medication with the Keppra, but I ended up having alot of simple partial seizures.
