Hello 
I'm new to this forum and new to this diagnosis of epilepsy, but I know I've had seizures for many years. They particularly worsened after giving birth to my youngest son. I tried to brush it all off as no big deal, and suffered with such depression that I think at the time NOTHING was a big deal to me. At one point years back I described them to my doctor and he put me on Topamax despite a negative eeg, which was kind of a joke when I look back, since it was only 30 mins long and not sleep-deprived with no triggers, etc. Anyway, the Topamax worked somewhat, but gave me kidney stones, so of course I quit. Then I went without meds for a few more years and let it go on for no GOOD reason, but probably just b/c of depression and not caring.
Well, they increased and became more and more intense. My depression lessened as I grew in my faith in God and started to take care of myself. So a year ago, I saw a neurologist who really listened and asked many detailed questions and now I'm diagnosed with "generalized convulsive epilepsy". Anyway, after researching, I now know I have simple, complex, and myoclonic seizures, and who knows what at night, since I have very weird sensations while in and out of sleep. He has so far given me no eeg, saying they only catch something 50% of the time, but said he may give me one later if the meds don't work.
Well, Lamictal and Keppra are HELPING, but I'm definitely not there, so I'm getting discouraged. It is beginning to really affect my life. Two triggers are the sound of water running, splashing, etc., and loud sounds. Not good when you're the church pianist and your preacher is loud But half the time I have no idea what the trigger is. I have more of them in the evenings and when my hormones are out of whack or when I'm sick with a cold.
Most of them involve episodes of VERY odd feelings in my head, difficulty figuring out which way is "up" so my head sort of droops. I also have periods of being unable to speak or understand language. I have myoclonic seizures b/c of biting hard suddenly for no apparent reason, or when my whole body decides to jerk for no apparent reason. My left/right "awareness" seems to be messed up periodically - hard to explain, but I feel like I have to consciously THINK about using the left side of my body?? I have periods where I'm aware but yet I can't really think either. I have a weird muscle twitch in my neck while having auras. I have heard, seen, smelled and tasted things that weren't there. I have what I call "brain skips" where it seems I lose awareness for just a second or two. Anyway, I think I could go on and on now that I think about it. No tonic-clonics that I'm aware of, but I wonder b/c of memories of strange things that has happened at night a few times.
It's affecting my life a lot now, so here I am. I also have a son who is multiply handicapped with well-controlled seizures due to Depakote. He's had 3 tonic-clonics. Hoping for answers and understanding, support as I am starting to feel alone with this.
Thank you,
Debbie
I'm new to this forum and new to this diagnosis of epilepsy, but I know I've had seizures for many years. They particularly worsened after giving birth to my youngest son. I tried to brush it all off as no big deal, and suffered with such depression that I think at the time NOTHING was a big deal to me. At one point years back I described them to my doctor and he put me on Topamax despite a negative eeg, which was kind of a joke when I look back, since it was only 30 mins long and not sleep-deprived with no triggers, etc. Anyway, the Topamax worked somewhat, but gave me kidney stones, so of course I quit. Then I went without meds for a few more years and let it go on for no GOOD reason, but probably just b/c of depression and not caring.
Well, they increased and became more and more intense. My depression lessened as I grew in my faith in God and started to take care of myself. So a year ago, I saw a neurologist who really listened and asked many detailed questions and now I'm diagnosed with "generalized convulsive epilepsy". Anyway, after researching, I now know I have simple, complex, and myoclonic seizures, and who knows what at night, since I have very weird sensations while in and out of sleep. He has so far given me no eeg, saying they only catch something 50% of the time, but said he may give me one later if the meds don't work.
Well, Lamictal and Keppra are HELPING, but I'm definitely not there, so I'm getting discouraged. It is beginning to really affect my life. Two triggers are the sound of water running, splashing, etc., and loud sounds. Not good when you're the church pianist and your preacher is loud
But half the time I have no idea what the trigger is. I have more of them in the evenings and when my hormones are out of whack or when I'm sick with a cold. Most of them involve episodes of VERY odd feelings in my head, difficulty figuring out which way is "up" so my head sort of droops. I also have periods of being unable to speak or understand language. I have myoclonic seizures b/c of biting hard suddenly for no apparent reason, or when my whole body decides to jerk for no apparent reason. My left/right "awareness" seems to be messed up periodically - hard to explain, but I feel like I have to consciously THINK about using the left side of my body?? I have periods where I'm aware but yet I can't really think either. I have a weird muscle twitch in my neck while having auras. I have heard, seen, smelled and tasted things that weren't there. I have what I call "brain skips" where it seems I lose awareness for just a second or two. Anyway, I think I could go on and on now that I think about it. No tonic-clonics that I'm aware of, but I wonder b/c of memories of strange things that has happened at night a few times.
It's affecting my life a lot now, so here I am. I also have a son who is multiply handicapped with well-controlled seizures due to Depakote. He's had 3 tonic-clonics. Hoping for answers and understanding, support as I am starting to feel alone with this.
Thank you,
Debbie