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Help! I'm desperately looking for answers

Tue, 06/28/2016 - 02:55
I was diagnosed with complex partial seizures about a year ago but I really don't think that's the problem...or at least the whole problem. I habe episodes that are very much like complex partial seizures and they happen almost every day, almost all day off and on. The problem is that sometimes I get either a different type of seizure or so many complex partial seizures that I lose consciousness. I have no memory of it, my husband or son will find me hunched over in my chair or face down at my desk in a weird sleep state. Sometimes they happen slowly and I can get myself to bed or to my chaise lounge but am asleep for 30 minutes to 4 hours based on the severity. I cannot live like this! I'm loosing my mind! It's messing with my sleep schedule. I have other conditions that may or may not affect the seizures. I have a number of genetic conditions (Ehlers-Danlos Hypermobility Disorder, dysautonomia and gastroparesis) that may or may not have an effect on the situation. I started having these episodes when I was around 16 (I'm 36 now) or so. Recently I bought an Apple Watch and because it takes your heart rate on a regular basis we were able to discover that I would have a radical drop in heart rate (lowest recorded was 32) and about 20 minutes to an hour later I would just completely "pass out" for lack of a better term. I had an EEG and my neuro said that I had "activity" in the left side and front of my brain that "resembled" complex partial seizures. He put me on lamotrigine (which about a year later still hasn't had any effect good or bad) and recently added Keppra. I'm just getting so frustrated because I can't leave the house hardly any, can't really drive, just sit and wait for more stupid seizures. Ugh! I can tell when I have the milder of the bunch...the are quick, I will have a twitch in my eyelid, tingling across my forehead, jerk of my arm, blurred vision, my eyes will kinda roll back in my head a bit, and things like that. These will happen for about a minute or two and will happen once or twice a day to several every hour, and even rapidly for hours. I've tried staying on a strict sleep schedule but that had zero impact. They do seem to rapidly increase around 4-5 pm for some weird reason, but even that doesn't seem to be a constant. Stress will definitely set them in motion almost every single time. I need my life back (or at least an improved version) or I'm going to go insane! I don't know how to manage these! If anyone has any insight I would greatly appreciate it!!! Thank you!!!

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