So I was just diagnosed in October, and have been researching and learning as much as I can because I want to know as much as I can-though it is so different for everyone, it really helps to hear any information from anyone with any experience.
First off... so many people on here seem so positive, how long did it take you to get there? It seems like every time I start to feel good and like things are looking up, I have another unexplained seizure and it brings me right back down. My meds aren't all under control yet, and from what I hear it takes a bit, but I'm still really down. I'm not working, not I'm school, can't drive... and I was fiercely independent before this.
Second, all but one of my seizures have been while I was sleeping, or right after waking up. Anyone have experience with these nocturnal seizures? One thing I saw that I liked was that people are more likely able to drive with these, but a scary thing was that my boyfriend told me that one night I turned over onto my pillow. My seizures don't usually last longer than thirty seconds, but that still scared me.
Third, I know I have tonic clonics-those are fairly obvious. But another type of seizure I've had is where I can't speak. I feel fine in my mind, but I can't send the thoughts to my mouth and make them come out. Are those partials?
Last.. do seizures ever just become.. normal? The most I've had was two tonic clonics in one night in one week, then this week I couldn't speak two mornings in a row. My neurologist wants to get my seizures more under control, but I'm wondering if some people just end up living like this.. oh and one more, SUDEP. I know it's rare, but did everyone go to sleep with the fear of not waking up at first? :/
Thanks so much for any advice, I'm so glad I found this website.
(Also, sorry if there's any spelling/grammatical mistakes in here. My laptop broke, so I'm posting from my stupid android phone with Swype. Hope this is all understandable!)
First off... so many people on here seem so positive, how long did it take you to get there? It seems like every time I start to feel good and like things are looking up, I have another unexplained seizure and it brings me right back down. My meds aren't all under control yet, and from what I hear it takes a bit, but I'm still really down. I'm not working, not I'm school, can't drive... and I was fiercely independent before this.
Second, all but one of my seizures have been while I was sleeping, or right after waking up. Anyone have experience with these nocturnal seizures? One thing I saw that I liked was that people are more likely able to drive with these, but a scary thing was that my boyfriend told me that one night I turned over onto my pillow. My seizures don't usually last longer than thirty seconds, but that still scared me.
Third, I know I have tonic clonics-those are fairly obvious. But another type of seizure I've had is where I can't speak. I feel fine in my mind, but I can't send the thoughts to my mouth and make them come out. Are those partials?
Last.. do seizures ever just become.. normal? The most I've had was two tonic clonics in one night in one week, then this week I couldn't speak two mornings in a row. My neurologist wants to get my seizures more under control, but I'm wondering if some people just end up living like this.. oh and one more, SUDEP. I know it's rare, but did everyone go to sleep with the fear of not waking up at first? :/
Thanks so much for any advice, I'm so glad I found this website.
(Also, sorry if there's any spelling/grammatical mistakes in here. My laptop broke, so I'm posting from my stupid android phone with Swype. Hope this is all understandable!)