ribbitflings

[ribbitflings]

ive been having nocturnal seizures way more often than usual and im lowkey wondering if the xcopri fucked me up so badly that it changed that too

[ribbitflings]

lol it is NOT because i got attacked by mosquitoes because i watched the rash spread up my wrist and there were no bugs to be found

got the most insane rash on my hands rn and it might just be coincidence and maybe i got attacked by mosquitoes, but imagine if i get pulled off of xcopri bc its giving me the most insane seizures and is killing me, only to get put on aptiom where it turns out im allergic LMAO

[ribbitflings]

got the most insane rash on my hands rn and it might just be coincidence and maybe i got attacked by mosquitoes, but imagine if i get pulled off of xcopri bc its giving me the most insane seizures and is killing me, only to get put on aptiom where it turns out im allergic LMAO

[ribbitflings]

currently off meds and rawdogging epilepsy again for a solid month and im remembering shit so well and not needing naps and my depression and PTSD are making themselves known again

honestly its great to not feel stupid again

[ribbitflings]

okay guys it's been a minute. im finally off of xcopri but it took me going into refractory convulsive status to do it. i ended up going into status a total of six times in a month (CSE three times, NCSE three times) and landed in the hospital for the final CSE. showed up actively seizing, blew some veins and apparently sprayed everywhere, they refused to outright say it was status and i ended up getting a hell of a false negative EEG that week because they loaded me up with 12mg of midazolam, plus a shitload of other seizure drugs. supposedly they saw literally nothing on the EEG (they kept me for five extra days), but with the drugs in my system, even a normal brain should have been showing slowing. i was awake for like 48 hours because despite being on benzos and "heroic" doses of seizure drugs ive never been on, i did not sleep and the seizures kept coming back in clusters until they finally just bulldozed me with keppra, lacosamide, and midazolam again.

because of the false negative, drug load, my shitty metabolism and anxiety (i refused to use the bathroom and wasn't eating for that whole week, so no excretion of the drugs), and the status, i had no seizures for the rest of the week and my brain didn't fully reset until three weeks later, although i did have a couple of seizures within that three week span. i also basically left with my diagnosis hanging over my head because i experienced a lot of sexism and insecure men because im in neuro too, so some bias probably played into the false negative EEG, as well as the fact that they didn't put it on properly and were always having to adjust the electrodes

Anyway, my doctor (who has spent his entire career running EMUs and EEG is his baby), begrudgingly ordered an ambulatory EEG after i criticized his beloved EMU and how even though the environment is controlled and people are there to help, it might be too controlled

a couple weeks later, its the week of the EEG and my period is about to start, which is a precarious time because i have a peak seizure window right before it starts and then the window shuts down during my actual period. i had to get the company to move up the installment by three days because my period was dangerously close...and then it completely disappeared during the entire EEG. it finally came the day after it was removed. BUT i still apparently had two seizures on that one, which is the first time in five years' worth of EEGs that i have seized on one, and one was a nocturnal one, which is the most pure form of data they couldve gotten. the seizure itself wasn't the best specimen, but it was a nocturnal one, so it's fine by me. so now they finally believe me, I'm off of the xcopri, and am starting a new drug that the doctor is planning on maxing out and seems to have little optimism of it working (because this is the sixth drug I've tried). so nine months of aptiom AND THEN sEEG finally. he didnt say in the follow up, but i saw in the report that apparently he wants a 7T MRI and a PET scan too, so it seems that they're doing a surgical workup anyway since we all know im going to fail drug number six within a year

[ribbitflings]

i get leg day better than any of those mfs on the roids trying to look cool in the gym

[ribbitflings]

one thing that just really kinda grinds my gears is when people think that god will "heal" their epilepsy forever and especially these shitty foundations and companies supposedly dedicated to "finding a cure" and "ending" epilepsy

stfu with that bullshit

all it's doing is leading people on with a thread of bullshit to make them hope that someday the founders' pockets will be lined enough to fund research, but even then there wont ever be a "cure" or an "end" and i hate how gullible people are to this shit

[ribbitflings]

SE for the third time in what a two week span?

NCSE twice ten days apart and thankfully made my partner not use my nose spray the second time bc i tried to sleep it off, and then just straight up CSE last night because why the fuck not

all this shit over M U S I C and its gettinf worse every time

[ribbitflings]

and may i add that my fucking narc mother had sent me a music video, after i had posted my infographic about a ridiculously niche form of epilepsy (to which she originally also responded with a fucking music video). i was trying to find tiny song snippets to show how bad the singer sounded and literally only 25 seconds of that shit total (i never opened my mothers message) and then later my partner scrollimg through Instagram reels that all had music, but with low volume, just kept that shit going.

how do i deliver the most personal and strongest "fuck you" to my mother that i am NC with

NCSE twice in less than two weeks and my threshold is so fucking low that ten seconds of certain music can trigger hours of seizures. things are looking good for my new xcopri 😍

[ribbitflings]

NCSE twice in less than two weeks and my threshold is so fucking low that ten seconds of certain music can trigger hours of seizures. things are looking good for my new xcopri 😍

[ribbitflings]

you know what hell might be

is when you have a focal seizure that tried to generalize, but two excitatory and inhibitory networks were fighting, so what was supposed to be your tonic clonic seizure keeps resetting itself and lasts the exact amount of time as a TC, but its just nothing but tonics that string together like a single seizure with no sustained phase, maybe the most minute of any "clonic" phase, and you got to be there for all of it because your fucking brain didnt quite make it to generalizing

[ribbitflings]

i honestly always hated the term "disabled" and didn't want to call myself that at all. i know it seems like a lot of people are calling themselves disabled and i feel like they're collecting words they dont grasp the meaning of to add to a list, but i didnt want to consider myself "disabled." when the seizures happened only once every few weeks, i was pretty okay right? besides maybe med side effects, which is already shitty. but now that "the strongest med on the market" is thoroughly fucking with my existing meds and probably rendered everything ineffective, even if we did try to go back to my original regimen, with the evolving strangeness and worsening of the seizures and their increasing resistance to emergency measures, im starting to feel like my *situation* is disabling, because the amount and severity of the seizures are disabling, but im still not sure that i would consider myself disabled yet. i know technically in legal standing i would be disabled, but my personal view of myself being disabled is entirely different than legal status

[ribbitflings]

my brother called me for a video call while i was actively seizing and i didnt see it until like 45 minutes later 🥰

[ribbitflings]

my new xcopri and lamotrigine have been fighting and at this point, i think the xcopri is winning

[ribbitflings]

I’d like to thank my brain for taking the time to send seizures my way tonight. It knows how much I love them and how much I love being confined to my bed with an ice pack, drugs, and killer headache.

[ribbitflings]

oh i posted this shit on my socials to target at the people and it literally says that music triggers seizures. my mother that im nc with fucking sends me a music video. and the last time i had posted something about epilepsy, she responded to it with something so fucking stupid that i actually almost blocked her

i made this infographic covering several topics that are important for me and targeted at some people i know, but feel free to use it

[ribbitflings]

went into status the other day, failed the first emergency pill, then required the nasal spray that it took an act of god to get a couple of weeks ago

i had tonics, which are my "usual" seizure type, and i dont think it ever progressed to TC like last time, but instead i ended up with spaced tonics and then NCSE and apparentlt sounded drunk and was spouting insults eveywhere and my mf partner got mad at me and i had to actually seize again before he knew i was still having seizures and had to give the nose spray