Hi everyone,
I posted here not too long ago, asking "how to live with frequent tonic-clonic seizures". I realize now that it was much too general a question to be answered with concrete, immediately applicable advice.
Some helpful suggestions were made, however. When I came here the first time (about a year ago), Nakamova pointed me to the Atkins diet for absence seizures. At the time, my neurologist told me not to bother with that because it was "too hard to stick with" and "not proven to be effective in adults". He first wanted to try adjusting my medication again. Which he did, twice. And when my seizures got worse instead of better, he put on the list for a VNS implant, which turned out not to be an option for me (or so said the surgeon in charge of the program).
Now I have been on the Atkins diet for nearly a month, and I am somewhat hopeful. Today is April 24, and I've had less than twenty t/c's so far, this month. At this point last month, I'd had close to fifty of them. That's a reduction of over 50%, which I suppose should be considered an unqualified success.
But 18 t/c's in three weeks is still a *lot* ... even when they usually come in clusters (so I do have seizure-free days, sometimes even seizure-free clusters of days).
Regardless, I'm left with the fact that my muscles basically never fully recover. I feel sore and tired all the time, and at this point, it's really interfering with everything I want to do. My productivity at work is going down the drain, even on the seizure-free days; I have to skip scouting activities because I don't have the energy to chase after adventurous ten-year-olds (and because no parent wants to leave their child with someone who might keel over at any time); I still play the piano every day, but I feel like the brain fog rarely lifts anymore, so I end up playing the pieces I already know instead of practicing new stuff ... which leaves me feeling inadequate, and disappoints my teacher. And then there's the fact that, every time I do have a seizure while out and about, it takes ages (as in, multiple hours) for me to recover enough to go home on my own.
I don't suppose anyone has found any magical supplements, or anything else, to deal with this kind of problem?
I posted here not too long ago, asking "how to live with frequent tonic-clonic seizures". I realize now that it was much too general a question to be answered with concrete, immediately applicable advice.
Some helpful suggestions were made, however. When I came here the first time (about a year ago), Nakamova pointed me to the Atkins diet for absence seizures. At the time, my neurologist told me not to bother with that because it was "too hard to stick with" and "not proven to be effective in adults". He first wanted to try adjusting my medication again. Which he did, twice. And when my seizures got worse instead of better, he put on the list for a VNS implant, which turned out not to be an option for me (or so said the surgeon in charge of the program).
Now I have been on the Atkins diet for nearly a month, and I am somewhat hopeful. Today is April 24, and I've had less than twenty t/c's so far, this month. At this point last month, I'd had close to fifty of them. That's a reduction of over 50%, which I suppose should be considered an unqualified success.
But 18 t/c's in three weeks is still a *lot* ... even when they usually come in clusters (so I do have seizure-free days, sometimes even seizure-free clusters of days).
Regardless, I'm left with the fact that my muscles basically never fully recover. I feel sore and tired all the time, and at this point, it's really interfering with everything I want to do. My productivity at work is going down the drain, even on the seizure-free days; I have to skip scouting activities because I don't have the energy to chase after adventurous ten-year-olds (and because no parent wants to leave their child with someone who might keel over at any time); I still play the piano every day, but I feel like the brain fog rarely lifts anymore, so I end up playing the pieces I already know instead of practicing new stuff ... which leaves me feeling inadequate, and disappoints my teacher. And then there's the fact that, every time I do have a seizure while out and about, it takes ages (as in, multiple hours) for me to recover enough to go home on my own.
I don't suppose anyone has found any magical supplements, or anything else, to deal with this kind of problem?
). Which means that, by definition, my muscles won't fully extend to be stretched if I'm consciously trying to stretch them myself. Stretching only works for me if there's another person in the room putting some serious (and the right kind of) force behind it.