Anyone else here have epilepsy? Because I've started having seizures again after two years and it would be nice to talk to people that have experienced the same things I have. Anything from the seizures themselves to treatment or brain scans! Or, if you don't have epilepsy, feel free to ask about it! I'm not shy about my disorder. Let's talk about epilepsy :D
I've had it since I was eleven. No idea why I have seizures but I do. We've done all sorts of tests and still no idea so I remain as having ideopathic epilepsy. Sucks because I have gran mals which are just the worst. Because you get sent to the hospital which means lots of hefty bills to pay and when you wake up it's like waking up with the worst hangover ever. Also sometimes the EMTs fuck up your shirts? So I always hope I vomit on them. Which is spiteful and bad because they are only working and trying to help me but. I lost my Space hoodie. Then I got two bills that added up to 3k. All I have in life is my hope that someone gets covered in my stomach contents. Fun epilepsy story that is also somewhat not fun. So there was this dude in one of my high school classes that had epilepsy. One day he had a seizure in class and it freaked people out. To the point where some people talked about how creepy he was. Because you know he's totally doing this on purpose and you can totally catch his epilepsy if he so much as looks at you. There was me and one other kid with epilepsy in the class. Pissed the fuck off about this we gathered together and brought him into our fold. We created the We Have Epilepsy And Also Fuck The Rest Of You Assholes Club. It was a good club full of bitching about medications, how people treat you like you're either a fragile glass pony or a walking disease giver, and our collective frustration with EMTs and hospitals.
The worst one I've ever had was the one where I started seizing during the middle of a movie at the theater. They had to turn the movie off to get me to the emergency room, and I was so god damn embarrassed when I woke up. I had two yesterday, actually. After two years of being seizure-free, I had two less than six hours apart. Fml
Boyfriend has temporal lobe epilepsy. Lots of little tiny complex partial seizures that get rid of his ability to speak or understand language, especially lately. He's had a bad six months. And now, as well as his seizures being not adequately controlled, it seems like one of his major meds may be causing hyponatremia and his neurologist is talking about switching things, when getting this regimen to work took like a couple years in the first place. It's been very stressful. @Aondeug you really get sent to the ER for all your full body ones? That kind of sucks. If you've had all the tests and nothing has turned up, it seems like being in the hospital isn't really doing much except costing you money :( I mean, obviously, if it's longer than typical for you, you go to the hospital, but otherwise, it'd probably be nicer to have the hangover and muscle pain at home, right?
People panic and call EMTs. If there is no one there to talk them out of it, they will take you to the ER. Dani had uncontrolled tonic-clonic (grand mal) seizures and Ancient Guardian always had to keep the EMTs away when she would have them in public. EMTs are good about it if there is someone there to take care of the person having the seizure AND the seizure stops in less than five minutes (after that it's a bad thing anyway, so should go). They would always hang around after anyway, until Dani could answer questions (not yes/no questions, ones where she actually had to know the answer) just to be nice. Still cost 100-400 $ (depending on the area) for the paramedic call.
Basically people panic like Lissa said. Unless it's like my family or whatever people will call the ambulance and I get the damned bills. And no one seems to get the things so I just get sent away while completely unconscious. With schools I've been told they have to call the paramedics for legal reasons. Which I get but it still annoys me. Heavily. Because as you said it really doesn't do anything save cost me money and annoyance. Also worst seizure I had was at a water park in a wave pool. Thankfully the lifeguard saw me before any real damage could be done. Still there Aon was staring death in the face and completely unconscious for it. My auras are fun in that I never recognize them for what they are and also I get exceptionally irritable during them.
Dani had a little doggy that would come running out and bite at Ancient Guardian or me, then run back to Dani's room, then back to us until we would follow her. Dani would be sitting there, seeming fine, but within ten minutes a seizure would start. We learned to ignore Dani saying that she was fine and pay more attention to doggy saying she wasn't. Doggy was NOT trained to do this, she did it on her own initiative.
Good dog. Best friend. My cat does no such thing. Or if she does no one listens to her because she's an annoying little shitfuck.
I mean it is but it also isn't. Some cats are very great dudes who are not annoying shitfucks. And then you have two I've got. Our one not shitfuck ass cat died because it ate sink cleaner and my stupid father wouldn't take the animal to the vet because fuck my brother I guess. Just let the boy watch his cat die.
The one cat around our house is of the "if I can't sit on you then you don't exist" variety. Her main occupation is snuggling Cherry when Cherry's MS flares up. And eating the few bugs that don't pay attention when Baby tells them to go back outside.
Those sounds like cats. Yes. That is a compliment. Also. Book rec for people with epilepsy. The Red Tree by Caitlín Kiernan has what is probably the most accurate depiction of my disorder I've seen. Sarah Crowe is just a crotchety bitch of a person endlessly done with the illness and her doctors. She also writes the reaction people have to it pretty fucking well. I'm just so happy that there is a book with an epileptic woman who gets more annoyed and exasperated by people's concern than anything else. One who is afraid to death of the sheer cost of it too.
The best thing to do when helping a person who's just had a seizure - leave them alone :). Once they are back to "themself" do NOT make a big deal of it, don't show excessive sympathy/pity/concern. Don't infantilize. Go on about your business.
Do you mind if I ask - do you recover quickly? For reference, Dani's normal recovery - to wear she could say her name and tell where she was rather than simple yes/no answers - was about fifteen minutes.
I take about at an hour at best. I wake up pretty soon but I'm too woggled by the whole experience to stay up for very long. So I go back to sleep and then wake up to HELL HOUR. HELL HOUR is essentially the worst thing ever and usually it lasts more than an hour. During HELL HOUR I'm usually too nauseous and dizzy to do much of anything save make calls and tell people what happened. Then I try and fail to sleep. Once I have one it's safe to assume that I am just done for the day entirely. So it makes sense that people panic and call ambulances. I'd rather just be left laying in a corner somewhere though because honestly I'd be fine. That or like the nurse's office.
Ah - okay - yes, I was ONLY referring to the "wake up and know who you are" part. The pain and agony after was a different thing - once Dani was coherent we just took her home (if we weren't there) and let her decide how she wanted to recover. Sometimes was lie alone in the dark for a day, sometimes was be snuggled in a pile for hours.
Ah. Then yeah it isn't that long until I wake up enough to signal for aid and get myself somewhere safe. But it's not soon enough to stop the people with the ambulance. I almost always wake up in a hospital when I'm coherent enough to make calls. The brief waking up period before that happens before I get to the hospital but I am basically just incapable of doing anything save be miserable and vaguely conscious.
Yeah - incoherent for 15 minutes after a seizure that has already freaked people out and no one there to speak for you - yeah, ambulance ride. Dani always had someone with her - even in NYC when the boys were little kids they could delay things long enough for her to come around enough to say "no" to the ambulance ride. Watching a 7 year old little boy harass a paramedic into waiting was actually amusing when Dani was doing good.
