How do you remain aware of and track symptoms without becoming completely neurotic or hypochdriac? I want to keep track of symptoms for my Neuro to try to identify triggers and possible seizure warnings, but it feels like I actually feel worse when I do because I pay more attention to and obsess over stuff I'd usually ignore. How do others balance this??? I really want to manage my E effectively without becoming a total basket case... Any tips or… read more
What I had to do was set up a camera that filmed so if you had a seizure it would record start and finish do this for 24 hours that should be sufficant
@A MyEpilepsyTeam Member I've found a couple of apps, one is called Birdhouse. I'm hoping they will help collect good data for Neuro - we shall see... I hate feeling like every twinge might be a clue and that I might miss something important that might really help if I don't log it all. There has to be a balance between collecting as much info as possible and crazy. I've just got to find it.
How did this go did you manage to do this I hope so let me know
Thanks, I wish I had a discernible aura. I drop completely and black out. I've awakened in ER 2x and dropped in several different rooms at home. The scary part is postictal, I am walking and talking for 5-10 min after coming to where I'm not really cognizant, nor do I remember it when I really return. I'm concerned I'll wander into the road or be injured, mistaken for drunk or drugged, taken advantage of or robbed. I also have conscious partial seizures w no amnesia that are annoying but less concerning, but finding possible warning signs for the biggies is my primary concern. However, as much as I want to, I may just need to accept that there might not be one and quit worrying about it.
Well. I have terrible self awareness so I probably am not much help. For me, I have just looked back to figure out if there was anything different but I also don't have seizures very often. For me, my aura was very obvious: it smelled like something like wiring was burning or plastic.