Epilepsy ... anyone else ?

[onewearz]

goin thru it right now. not to be nosey in anyone's life, just curious if anyone else deals with this. i been having seizures now for over 10 yrs. crashed my car having one, had 2 chips put in my brain last summer, took meds that turned me into a raging psychopath. just got sent home from work because of symptoms and they're telling me now to take a leave of absence cause everyone there is terrified. it's embarrassing at this point , i'm the guy who passes out.

like i said man, not pryin into anyone's business. just seeing if anyone here is goin thru it like i am. **** is alot right now ....

 

[アキラ]

Sorry to hear that OP.

You may be able to find people with epilepsy on Reddit that can def understand what youre going through if no one on NT has them.

 

[MakeNTGreatAgain]

hoping you feel better man, that stuff is not easy to deal with

 

[x Buddha Bless x]

Co-worker got it.

Recently had to sell her car cuz the meds weren’t as effective and she got in to an accident.

Scary stuff.

 

[6 Rings G.O.A.T.]

Stay hydrated.

 

[onewearz]

funny u say stay hydrated , i drink like 2 gallons of water a day now. i'm takin a bathroom trip every 10 min


appreciate the advice. like i said man it's a pain in the *** cause no one has an answer. it's always " we can try this " ... like i said, just was wondering if anyone had success dealin with this and finally stopped takin medicine and lives comfortably.

 

[deusavertat]

My wife has occasional seizures that sh** still terrifies me til today.

She should be on medication for it but she isn't always compliant.

 

[onewearz]

feel for her. my wife's has vids of me having seizures , sleepwalking . she recorded it for the docs but i can't watch em. terrifies me man. gotta be strong as hell to watch that on that regular. my best to u guys

 

[niketalker23]

Could smoking, edibles, CBD help?

 

[deusavertat]

feel for her. my wife's has vids of me having seizures , sleepwalking . she recorded it for the docs but i can't watch em. terrifies me man. gotta be strong as hell to watch that on that regular. my best to u guys

That post-ictal fog and amnesia

 

[jaymosenvied]

Does smoking weed help?

 

[onewearz]

i smoke all the time. i like to think it helps but i do notice they always happen if i don't take my meds. like i'm hancuffed to em. sometimes i have problems getting them on time and if i don't have em i risk having one. longest without i can go is maybe a day in a half. whole time i'm scared **** less wondering when it'll happen.

but like i said, i do hope weed helps

 

[nikekid6]

onewearz you take keppra? i know some co workers who take it plus my cousin does as well

ive been trained to handle the seizures of those with it and its never pleasant. i feel for you

but if you dont mind me asking and i am not trying to be disrespectful.. when youre having an episode. do you really not remember any of it?

 

[onewearz]

onewearz you take keppra? i know some co workers who take it plus my cousin does as well

ive been trained to handle the seizures of those with it and its never pleasant. i feel for you

but if you dont mind me asking and i am not trying to be disrespectful.. when youre having an episode. do you really not remember any of it?

i remember nothing, that's me tho. some people say they know it's coming, i have no clue. i've collasped on a train platform and woke up in an emergency room ( i really thought i died then ) . it's happened at work more than once. but after is the worst. head feels like a bowling ball, can't eat, everythings loud and i literally sleep like a day and a half.


i took keppra and it was one of those that had me like an animal. people were scared to talk to me , i literally even was ready to throw down with some 60 yr old lady i work with

i take Briviact and it seems to work. i have to take mood stabilizers to keep me from murdering anyone but all that seems to work except when i miss a dose which usually happens once a month since what i take is considered a controlled substance, they make it a pain to get every month.

 

[deusavertat]

Weird I didn't know aggression was a side effect of Keppra. It mellows my wife out if anything

 

[onewearz]

Weird I didn't know aggression was a side effect of Keppra. It mellows my wife out if anything

thankfully it works for her man. can't tell u how many family functions i ruined with my anger, my oldest daughter's graduation i flipped out cause of the restaurant. my co worker and i share the same name, i'm known around work as "the mean one"

 

[feeninlikejodeci]

Had an upstairs neighbor who had been epileptic since the age of 9. Because her seizures had started as a child, it hampered her brain development and she had extreme behavioral issues. Her mom was constantly having to call the cops on her. The year after her high school graduation, someone at the Developmental Disabilities office had hipped her to the fact her Mom was getting a monthly SSI check + Food stamps so that set off a year long court battle to get the "Payee" status removed and eventually she moved out on her own into my building where she stayed for almost a full 5 years.

Cause she had the mind of a child, she would constantly invite random people off the street into the apartment who would inevitably steal stuff. I thought her problem was moreso boredom so I invited her to a few jobs she could work part time and not lose her benefits. Thing is, the anticonvulsant med (Vimpat) would inhibit her verbal function (word finding difficulties) You'd be asking her a question and she'd either shrug her shoulders or stare off into the distance. Or she'd respond "Why" unable to understand context clues, of why you asked said question.

I also found out she had what's called a "VNS" implanted in her chest that sends waves up to the brain to counteract the hyper electrical signals. Thing is, it has to be recharged every 7 years, which coincided with her downfall

She eventually got evicted for doing Karen type stuff like trying to interrupt people grilling outside and calling the cops on them. Then she found another apartment but got evicted after getting into a fist fight with another female, for which she spent 2 weeks in jail. Crazy thing is she had surgery scheduled to get the battery recharged which would've brought her back to normal, but cause she was in jail she missed it. Ended up spending COVID living out of motels and womens shelters. Eventually after getting kicked out of the last shelter she started staying in vacant buildings with this Vietnam Vet in his early 70s. One morning they got into an argument where she started dialing 911 and he tried to knock her phone away with his baseball bat. Well she overpowered him, took control and struck him on top of the head a good 10 times. When the Police got there he was convulsing on the ground already braindead. She got arrested and when he slipped out of the coma she ended up getting charged with Manslaughter and is in Prison until 2029.

 

[frink85]

first time seeing this post...

first seizure in Dec 2011, while in school. friend next to me thought i had fallen asleep, fell to the floor and madness ensued. three classmates had to carry my fatass to the hospital in the next building. started on Keppra/levetiracetam and have been on that and adding Lamictal/lamotrigine as well over the years. Unfortunately due to the nature of epilepsy it's a lot of trial and error with meds, it works until it doesn't and you gotta increase dosage or add another drug.

Kepprage is real lol thankfully I've never really experienced it but I'm a really easygoing guy so maybe my rage is being overly annoyed at people on the road (when I used to drive) lol

r/Epilepsy has been a great place like someone said to vent/rant or to ask questions

had some seizures on and off over the years, had a good seizure-free stretch from 2018 to 2021 but poor sleep habits and the car crash the next day was a huge downer. been having them every few months the last year always related to poor sleep the night before. melatonin helps, but I really gotta get my sleep patterns in check.

all of my tests/MRI/EEGs etc have been clean (like most folks) so just gotta be vigilant about sleep and for sure I'm always compliant with my meds.

 

[onewearz]

sad to hear that man. people don't realize these meds do help but the side effects often no one thinks about. keppra made me destroy my living room one day cause of a dumb argument with my wife. i was spitting at the furniture i flipped over and sat in a chair tryin to calm down for like 20 minutes. i can actually see how a person can flip and not realize what they're doing on these meds. missing a dose seems to also be my biggest trigger. i miss one and things get crazy. maybe the stress of waiting for it to happen if i do but nowadays i've learned to take this serious and don't miss.

sleep is the most important thing it seems. i get 7-8 and i feel great, anything less and i'm in the "danger zone" .

all my best to everyone goin thru this ...

 

[frink85]

sad to hear that man. people don't realize these meds do help but the side effects often no one thinks about. keppra made me destroy my living room one day cause of a dumb argument with my wife. i was spitting at the furniture i flipped over and sat in a chair tryin to calm down for like 20 minutes. i can actually see how a person can flip and not realize what they're doing on these meds. missing a dose seems to also be my biggest trigger. i miss one and things get crazy. maybe the stress of waiting for it to happen if i do but nowadays i've learned to take this serious and don't miss.

sleep is the most important thing it seems. i get 7-8 and i feel great, anything less and i'm in the "danger zone" .

all my best to everyone goin thru this ...

everyone has their own triggers but it seems for a lot of us it's sleep

aint no worse feeling than sleeping late and/or waking up too early and now your day is ruined because you should stay home near your bed just in case

 

[quincy powell]

My epilepsy started after an accident. I was wearing a helmet but enh…Haven’t worked since then. That Kepprage is real. Can’t say I’ve learned to deal with it because I’ve stayed away from certain situations and people. Going back to work will be the real test I fear I’m not prepared for.

I couldn’t imagine working and having families…responsibilities. It’s been almost 5 years. I’ve been biding my time because I’m afraid to go back to work. My memory is trash now, if I don’t sleep I can doze off at anytime, and my patience is thin. The things I do remember are very odd. Dreams odd.

The flowers help a lot but if I go back to the job I came from I wouldn’t be able to enjoy the garden again.

Wanted to post in here a while ago but I’ve had a rough week mentally so now I decided to share. I lurk the Reddit community but I’m more comfortable sharing here.

Thank you for starting the thread. Thanks to those who have shared their experiences. Be well. Be great.

 

[onewearz]

My epilepsy started after an accident. I was wearing a helmet but enh…Haven’t worked since then. That Kepprage is real. Can’t say I’ve learned to deal with it because I’ve stayed away from certain situations and people. Going back to work will be the real test I fear I’m not prepared for.

I couldn’t imagine working and having families…responsibilities. It’s been almost 5 years. I’ve been biding my time because I’m afraid to go back to work. My memory is trash now, if I don’t sleep I can doze off at anytime, and my patience is thin. The things I do remember are very odd. Dreams odd.

The flowers help a lot but if I go back to the job I came from I wouldn’t be able to enjoy the garden again.

Wanted to post in here a while ago but I’ve had a rough week mentally so now I decided to share. I lurk the Reddit community but I’m more comfortable sharing here.

Thank you for starting the thread. Thanks to those who have shared their experiences. Be well. Be great.

yeah my memory is shot. can't even remember things i did with my kids and family. they tell me things now and it's news to me. didn't think many would respond here when i started this but i'm glad we can share experiences and help each other out

everyone be well ....

 

[quincy powell]

Afternoon folks, how has 2023 been so far?

 

[onewearz]

just had an episode last Friday night while watching tv. woke up to my wife rubbing my head and had no idea what happened. she said it wasn't as bad as others have been but i was wiped out as far as energy. i slept till the next afternoon and could've stayed in bed all day probably. Been having trouble sleeping lately and thats a major trigger for me. hopefully going to the gym will wear me out and keep me sleeping thru the night.

good luck again everyone. this dam epilepsy is an *** kicker