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Scared of my Seizure Pain

Sun, 04/09/2017 - 13:21
I had my first seizure at the beginning of last summer. My seizures start in my left hand and spread throughout my body. I am currently on 1500 mg of Keppra and just started 300 mg of Trileptal. The first couple seizures weren't bad at all because I wasn't aware very much in the beginning. Now that I've gotten farther into puberty and have had more seizures I've become more aware and the pain is unlike anything I've ever felt before. It feels like my arm is getting twisted really far and getting folded in on itself. Out of a 10 for pain I give it a 10 and the best part is when I lose consciousness because the pain stops. I was having a seizure about every other month but since I turned 16 last month I've been having one every week. I don't have fear about where I have a seizure because I've already had one at school, my gymnastics gym, and the store. I really just have fear about when I'm going to have one. I've tried things like controlling my breathing and praying but anything that startles me sends me into panic and I have to grab my left arm to check because I've connected any fear to my Epilepsy. Also the Epilepsy process is very slow with my neurologist and he isn't in very much contact. Also everyone I've told about the pain I feel in my arm seems to brush it off like it's the least of my worries but whenever I think about the pain I get really nervous. Any advice?

Comments

Yeah I was in a MVA and

Submitted by Roald on Wed, 2017-04-12 - 02:57
Yeah I was in a MVA and started having seizures after multiple spinal compression fractures. I've had to basically have some arguments about it with some doctors... Found new/better ones because of it. My back pain is a definite trigger but I've found some "head" Drs don't really comment about other body parts and look at you like you are an idiot. I think we know our own bodies better than most people realize, even diagnostic machines. If you "feel" it and "know" it, it is probably true and real even if there isn't direct evidence or people just blow you off. My chiropractor said many specialists are basically like parts mechanics: they understand that one thing very well inside and out but the don't necessarily know how all the parts are supposed to fit together or how the car is supposed to run.

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