There was a time where the paramedics took her after she said no - the insurance refused to pay AND defended her right not to pay.
If you can answer basic questions like "what is your name?" "where do you live?" and "tell me what happened" then they must ask permission to take you AND they must abide by your answer. Note - "do you know ..." is not the same - yes/no questions are NOT what they are supposed to ask. Dani would always answer "yes" to any question after a seizure.
Yeah, boyfriend has trained himself to answer those kinds of questions more or less okay even he can't really understand what's being asked. He only ever had a handful of tonic-clonic seizures before meds started working well enough to prevent those, but he's had larger complex partial seizures while out of the house before. People freak out, but he's usually able to at least get them to talk to his parents on the phone before they do the hospital thing.
my mom has epilepsy from an accident as a kid, but its controlled pretty well by her meds. i can't recall if i've ever heard of her having a grand mal out and about, she can't drive because of the epilepsy so she doesn't get out of the house much. the most we'd do is call her boyfriend so she had another adult to lean on when she came out of it. and my brother would grab a bucket for her since it'd mess with her stomach. all of her kids get on her to make sure she gets enough sleep, since thats supposed to help. even the five year old XD I'm not sure if he picked it up from us or got it on his own.
re: @Vierran Vary the questions. "What color is my shirt?" "How many fingers do you have?" "Point to my left with your right hand." Things that aren't overly hard but not predictable.
I remember my first public one. The EMT asked me stuff like "what is your birthday?" and I remember being really confused because I was still really out of it and I had no idea why my birthday was relevant to anything. All this talk of EMTs being said, I do appreciate the fact that people are trying to help. Especially when the first two public seizures happened and no one knew what to do. I was able to be taken to the hospital to recover and have everything explained. The ones I had a couple days ago I was able to, thankfully, go back to my room and sleep for like four hours. Then I woke up and had another one a couple hours later. I still got to sleep, though! You know what's really annoying? When I keep having to have EEGs and there's no results from it. Especially once when I went in for the test and midway through it I really had to pee and we paused the entire thing so I could go to the bathroom, the wires still attached to my skull. So embarrassing.
There are cards someplace on the net that say what to do if you have a seizure in public - get one, or make one of your own. Keep it in a place that even the most helpful idiot will find. Make one that can shout at them to stop doing what they are doing, if you can, since bystanders will rush in and do the things they shouldn't (they love to do the 'put something in the mouth so they choke to death' thing). Do NOT memorize the answers to the typical questions - the whole point of them is to detect when you are "thinking" again. Don't try to bypass that. You want to live until your brain is working right again. EEG is bad at detecting anything unless you wear the thing all the time and it catches a seizure happening. Seizures that are not predictable will also not be detectable in a doctor-office-EEG. Nor an MRI if they cannot induce a seizure while in teh MRI. Multiple tests in the same circumstances are just ways of padding the bill (and yes, most doctors are more interested in your money than your health - but when you get a good doc they are REALLY good). Multiple EEG in a "sit there and do nothing" environment are NOT standard. It's supposed to be a baseline. Do it once, then if behavior changes do it again and compare to the baseline. Not do it often - that serves no purpose (except getting them more money). This is not all but it is all my brain is willing to put in words for now - words are hard :) - I never had seizures, but the reason I met Dani was to take care of her because of hers, and Baby had seizures instead of puberty (that was not fun for anyone) .
Man I don't remember any of the shit when I am asked stuff by EMTs. Or anything like an hour or three before the seizure. My seizures kill my memories HARD. So I'm just very acquainted with fake memories as a result because I construct them after people tell me shit.
I love the fake memories - and I don't have seizures. I just have "Can't Remember Shit So Make It Up As I Go Along" which had some very fun side effects before docs figured out that my brain really does that shit.
It makes me very paranoid and weirded out by just how fragile and bullshit brains are. My "self" is just so fragile. Enough done to my dumb head and it will be gone as easy as those memories are!
Brains are just bundles of flesh and nerves, after all. Anything can go wrong! :y I've always been pretty good about remembering what happened when I woke up. Except for the time at the movie theater, I've remembered fuzzily some of the events after I got coherent enough to form a sentence. A couple days ago, when I had the first one of the day, I just remember waking up on the floor, a pillow suddenly being under my head, and my dog lying on top of my legs trying to comfort me. My poor little sister was with me when that happened, and she started calling herself a nurse and "helped" out, but it was too cute for me to be mad at. Bless her heart.
*tentatively joins thread* I had benign rolandic epilepsy as a child, which means I'm no longer epileptic, but we didn't know that for certain until the end of my teens. I thiiiiink??? that I'm now at no greater risk of seizures than the average non-epileptic person, but that's uncertain. People still assume I'm more likely to have seizures; I've been turned down as a participant in studies because of it, and had mixups with my doctor because of it, and had to fight hella hard to get back on my medication after Dr Fuckboy fucked it all up because the new doctors were like "ohhh uh that might lower your seizure threshold". (Honestly, my reaction was "lol bring it on then". It's kind of like growing up on the San Andreas Fault and then moving to Britain and hearing people talk about earthquakes; obviously earthquakes aren't good, and I know full well how dangerous they can be, but I also know how minor and harmless they can be. "There may be a slightly increased chance of having a seizure if you take this medication", to me, sounds like "you will be at higher risk of being in earthquakes if you move back to California"; I understand the risk, but I grew up understanding it, and it doesn't automatically frighten me.)
