Discussion Thinking of going off the seizure meds. No idea what to do...

[plskilme]

This is gonna be a long one, so get ready:
I'm on meds to deal with seizures. I don't know the name of them off the top of my head as of writing this. Tempted to go off of them though because I'm sick of life, and its fucking annoying having to wake up at a certain time to take them and then have to take them again 12 hours later. It really doesn't help that I'm one of those people who can't fall back asleep after waking up. I'm a little bit worried about going off of them because last time I had a seizure my whole body hurt for several weeks after. It was to a point where picking up something as light as my phone felt like holding something that was 50 pounds (22.68 kg). It really doesn't help that I remember it happening (unlike every other one I've had when I was younger).

[For those who care/want to know: I had woken up in bed at around 2 AM after coming home from a Yu-Gi-Oh tournament with my friend (made it home around 1 AM and fell asleep) and I forgot to take them with me that night and my whole body and jaw locked up. I tried to scream for help, but couldn't even get my mouth open to do so. I genuinely thought that was it. It was some scary ass shit... Since then I've only been late with my meds/forgot to take my meds a few times but nothing has happened. So I'm wondering if the meds are even doing anything anymore.]

Also, that fucking ambulance ride was fucking expensive. I'm just tired of pretending everything is ok mentally, and I really don't want to be baker acted. But I also don't want to end up in the hospital again, and have to pay a ridiculous ambulance fee again (especially in this economy). I just really don't know what the fuck to do.

Best case: I die from a seizure.

Worst case: I fucking live, end up in the hospital, and have my body feel like complete ass for a few weeks.

TL:DR (would recommend reading whole thing because I'm bad at writing these)
I hate my seizure meds because they fuck up my sleep schedule, and I'm tempted to quit them since I haven't had a seizure since July 2025. But I'm scared to because the last time I missed a dose, I had a really bad seizure that left my whole body hurting for weeks and cost a fortune thanks to ambulance ride. I'm mentally exhausted from life in general but stuck between freedom from the meds and fearing another hospital visit.

 

[strangelove]

i have epilepsy, you won't die if you quit them unless you enter in a very severe 'status epileticus'. unfortunately seizures don't kill us, they only fuck us up

edit: have you tried trileptal? i don't feel any side effects except for a lil fatigue and it messes with my short term memory sometimes

 

[Fadenself00_]

First of all, you should make sure to know what it is that you are taking. Secondly, it's probably a benzo and they have to be tapered very, very slowly, otherwise you will have severe withdrawl seizures. Please try and have it supervised with a neurologist, especially so there is a doctor who knows about your situation in case something happens (many neurologists/psychiatrists suck, but I would hope the neurologists would at least be aware of withdrawl seizures from benzos).
Anyway, be careful and remember how there is a high risk for brain damage if you taper too quickly

 

[bagel12]

This is gonna be a long one, so get ready:
I'm on meds to deal with seizures. I don't know the name of them off the top of my head as of writing this. Tempted to go off of them though because I'm sick of life, and its fucking annoying having to wake up at a certain time to take them and then have to take them again 12 hours later. It really doesn't help that I'm one of those people who can't fall back asleep after waking up. I'm a little bit worried about going off of them because last time I had a seizure my whole body hurt for several weeks after. It was to a point where picking up something as light as my phone felt like holding something that was 50 pounds (22.68 kg). It really doesn't help that I remember it happening (unlike every other one I've had when I was younger).

[For those who care/want to know: I had woken up in bed at around 2 AM after coming home from a Yu-Gi-Oh tournament with my friend (made it home around 1 AM and fell asleep) and I forgot to take them with me that night and my whole body and jaw locked up. I tried to scream for help, but couldn't even get my mouth open to do so. I genuinely thought that was it. It was some scary ass shit... Since then I've only been late with my meds/forgot to take my meds a few times but nothing has happened. So I'm wondering if the meds are even doing anything anymore.]

Also, that fucking ambulance ride was fucking expensive. I'm just tired of pretending everything is ok mentally, and I really don't want to be baker acted. But I also don't want to end up in the hospital again, and have to pay a ridiculous ambulance fee again (especially in this economy). I just really don't know what the fuck to do.

Best case: I die from a seizure.

Worst case: I fucking live, end up in the hospital, and have my body feel like complete ass for a few weeks.

TL:DR (would recommend reading whole thing because I'm bad at writing these)
I hate my seizure meds because they fuck up my sleep schedule, and I'm tempted to quit them since I haven't had a seizure since July 2025. But I'm scared to because the last time I missed a dose, I had a really bad seizure that left my whole body hurting for weeks and cost a fortune thanks to ambulance ride. I'm mentally exhausted from life in general but stuck between freedom from the meds and fearing another hospital visit.

taking meds every 12 hours sounds shitty, that would mess up my sleep schedule too. no wonder you're exhausted

could you switch to seizure medications that are only taken once a day?

imo the worst case is getting permanently disabled from a prolonged seizure/series of seizures. or getting other cognitive issues from it. quitting seizure meds cold turkey sounds risky especially if it results in neurological damage or an ambulance ride

is there a medical professional who could help you slowly taper off your current meds and start once a day meds?