sister with JME

hello everyone! i'm new here, so i'm very sorry if everything seems a bit jumbled. i'm honestly not the best at really explaining anything. i'm just stressed out and i guess maybe i could use some help with coping.

last year in december my 15 year old sister was diagnosed with juvenile myoclonic epilepsy. it was a bit of a relief, because 3 times before that over the extent of months she had had tonic-clonic seizures. it started a year before that with the myoclonic jerks, and it took us until december to even realize she had epilepsy. having a diagnosis was nice.

after she was started on her generic brand keppra, she began having them every time the doctor upped the dose (though he'd warned us that it would happen, so we expected it). eventually he ended up switching her meds to generic brand lamictal. she's currently in a period where she's taking 2 time release keppra at night while just beginning to take the lamictal along with them twice a day.

the day before yesterday, after she had come home from school, i found her on the floor of the kitchen in the middle of a seizure. i'm 21 and live with my mom and sister, and my mom was at work while i was home alone. i'm going to admit, i'm not the most "adult" 21 year old there is. i think i handle the seizures pretty well externally, but lord help me if it doesn't stress me out inside. after staying with her until she came to and helping her back to her room, i stayed with her while she recovered until my mom came home from work. well, she slept most of the time, but she couldn't remember if she took her keppra at the right time. this was where the trouble started.

we didn't know if she had taken the keppra or not, and she couldn't remember, (which was our mistake, we admit) and we didn't want to overdose her since we didn't know what it would do. it was too late to call the doctor and ask. the next morning she indeed did have another one just like we thought she would (since it did apparently seem to look like she missed her dose). i stayed with her once again the whole day and made sure she was ok until my mom got home again.

i'm afraid she'll have another one today. she already appeared to have an absence seizure (or it looked like one at least, i caught her staring emptily into her cereal bowl and she jumped when i talked to her). she's acting drowsy, but she only woke up about an hour or two ago. i'll be home alone with her again all day today.

i know what to do while she has them, but i'm just stressed out. i'm constantly checking on her. my mother put a baby monitor in her room and mine so i could possibly hear if she began to have one. i told her i'm not listening unless i hear her making a weird noise, because i don't want her to feel like im listening to her conversations or anything. i feel bad for her, and i feel bad for my mother, and i guess myself. she has it the worst of course, going through biting her tongue and the exhaustion afterwards. i feel bad at all saying that it's hard for me too, but it's very mentally taxing.

i guess what all this is for is, i'm asking for some kind of help on how i can help cope mentally with my sister having tonic-clonic seizures. i'm afraid of the noise she makes when she begins to have one and the way her body stiffens (she pushes herself straight up and makes what sounds like an exaggerated yawn, then her eyes roll back into her head). the seizing itself isn't the hard part for me to witness. i can't worry myself all day with making sure she's ok, and i hate invading her privacy constantly just to see if she's alright. i'm so worried though.

i just needed somewhere to talk about this. me and my mom discuss it a lot, but nobody else i know really deals with seizures often. i know right now it's mostly hard because we're trying to figure out the right medicine + dosage for her, which means every time it's upped she's going to probably have one within 48 hours, but until we reach that sweet spot it's going to be really, really scary. : (

thank you for reading my rambling!