I have been trying to use My Seizure Diary from epilepsy foundation but finding it difficult to get set up. I just want a systematic way to keep track of my son's seizures. For the last 8 months or so I have just been keeping a log in my notes but would love to view it on a calendar etc and have a way to compare severity and possible triggers etc....
You can also get a voice recorder, and clip it to your keys, or your phone case. That makes it possible to talk during the seizure or record even while you are assisting, and it would time it for you. You can rewind to take notes. Some college students use them. I wonder if you can set up Google by saying "okay Google record"
@A MyEpilepsyTeam Member i have complex partials and i have a system. i have a smartphone and i used notes. if i have a seizure i put the time and the date and then the ABCS of seizures. lets say i had a spaceout (aura seizure) around noon at 1/2/2019 for about 1 sec. i type in '1/2/19 - 12:00 for 1 sec - S'. i am always on my phone.
I think My son also seems to have partial complex seizures. Would you mind sharing what your experience is like? He typically says he can’t see, he sometimes has a nystagmus, sometimes the eyes just go to the side, he can respond to us but seems “out of it”, and often can not tell us where he is. He had one day of more generalized seizures when we had switched to another medicine but the keppra seems to keep the generalized ones away. Do you experience anything similar?? I am not sure if his seizures are unusual or there is just such a variety that everyone is different ???
I used to, but it became difficult to track dates, times and length of seizures because I was always alone when the seizures happened. So it was hard for me to keep track once I had an attack.