When did you get it?
Diagnosed 1992 I think winter. Oh wait nope summer.
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
Hi all. My son recently started seizing (grand mal) again after 4 years of being seizure free. I’m looking to buy him a seizure alert device but wanted to know if anyone has any experience with them. I’m currently looking at My Medic Watch App which connects to a smartphone or the Embrace 2 Watch. Are there any other options out there? Your insight is much appreciated.
Hi Becky. My son started having absent seizures when he was 7. At age 15 he suffered from his first grand mal (this happened after his father’s funeral. He died from congestive heart failure)… read more
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
Thanks for the information and to the helpers! Very important and much appreciated!
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
I am set to have the ECoG Intracranial EEG(the grid on the surface of the brain), I have had the Depth Electrodes once. With my limited research it sounds that the depth electrodes were significantly easier... Just curious if someone could shine some light on what that whole process looks like and what I have to look forward too.
Me 5 days
I ask this question because I honestly do not know where I would rate my neurologist. I am not holding it against him that I have not seen him since December 2019 because I he was preparing to get me scheduled to to to the Tufts Medical Seizure Center in March of 2020 when access was shutdown because of the pandemic. Right now, we do not interact at all and he simply faxes in a new prescription to the pharmacy when requested because we need time at that seizure center to figure out what to do… read more
mine is a 1
i want to know as much as possiable about it they r talking about doin this on my daughter
It doesn't matter how much I try paying attention to the conversation. I couldn't tell you everything word for word even if it's just happened. It's like it goes in one ear and out the other. Like following instructions if I've been given 3/4 things to do if I've not written down I would be able to remember 3 & 4 but not 1 & 2
@A MyEpilepsyTeam Member I am sorry to hear that your family reacts that way. However, you have friends on here, and we can reassure you that you are normal. Epilepsy/Seizure Disorder doesn't make… read more