i want to know as much as possiable about it they r talking about doin this on my daughter
I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.
If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more
@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more
When did you get it?
Diagnosed 1992 I think winter. Oh wait nope summer.
I was reviewing my sleep log (started keeping one July 13, 2018). I haven’t been to bed before midnight. A couple of nights I went to bed at midnight but more often it is between 2am-5am. I don’t have a consistent sleep pattern. Some nights it’s 4 hours, some nights it’s 10 hours. Regardless of how many hours I sleep, I feel wiped out when I wake up.
What is your experience like?
I'm flakey as far as my sleep schedule. It's regular, but off hours. Unless I'm involved in physical activity, by 9:00 pm I can't stay awake. If I go to sleep, I'm up by 4:00 am, wide awake. I keep… read more
No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more
In the case of most of us (unless those who suffered brain damage that specifically damage to long-term memory in the inner brain with the hippocampus and memory central command) or are suffering from dementia (easier to get a test now that can show if you have early stages or soon will have do to recent research published earlier this year), then all of your memories (nothing that occurs during a seizure except those seizures like the Simple Partial Seizures that you are completely aware… read more
Ahh ok I was just wondering. Thank you Marilee.
I'm having a eeg next Friday what should I forward to
How did your eeg go?Have you asked for the results yet?I feel bad for you. Your side effects so common almost required I tried so many meds and groups of meds I've experienced. each of these side… read more
I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.
It could have to do with petit mal
Our son was diagnosed with CAE when he was 3 years old, he's now 11 years old & under his consultant was gradually weaned off his medication as he had been seizure free for two years
So since November 2021 he's not been medicated, however over the last two months (from April 2022) we've noticed he's been having what we think to be absent seizures which is having a massive effect on him at school & at home. It's causing his mood to change, he's very tired, he gets headaches & loses… read more
I've had absence seizures (Jeavons syndrome) my entire life. Most of it was med-free because we didn't feel the the side effects of the meds that were available in the 80s justified the pay-off. I… read more
Does anyone else have an up & down type of depression? One day you’re good, another day you’re doing well but something small makes you emotional & cry all of the sudden, another day you're good but something annoying happens & you get angry fast, another day and you’re sitting with your kitty (or other pet) on your lap at 8pm & you just hold them, thanking them & saying you love them, because they’ve saved your life... going in an up & down wobbly circle.
As well as my epilepsy I also suffer from depression so I am on antidepressants as well as my anticonvulsants anyway.