To ask for any experiences of Cenobamate (Ontozry) for epilepsy?

[WeBuiltCisCityOnSexistRoles]

I know this is AIBU but the health topic is so quiet! Technically I could have asked if AIBU to dislike Cenobamate, but I know IANBU anyway, so just wondered if anyone has any experience of this drug they could share?

It's my fourth AED and I am fucking beyond fed up, and at the point of just throwing in the towel tbh. All the side effects and seizures too, I may as well just have the seizures (I know this would BU and won't just withdraw but it's now I'm feeling atm).

Slightly discouraged but still hoping style bump.

God this stuff is shit.

These drugs are shit I mean, obvs I don't mean Mumsnet is shit!

Hi OP. Ive got Juvenile Myoclonic Epilepsy, and its basically uncontrolled unless I take Epilim, which basically destroyed my body with awful side effects. You have my full sympathy as I'm on medication #7, and its really disheartening.
Anyway, I'm not here to depress you, but to offer some support. Ive never used cenobamate, but I looked it up and found that its called Xcopri when its marketed in the USA. I found this website which you may find useful (every AED has its own version, but you need to find the original marketing name) https://xcopri.com/ if you scroll down to the bottom of the page there's links to 2 pdfs "prescribing information"and "medication guide" I find these docs useful for any AED Ive taken (currently on Briviact), and whilst it may seem a lot of info, I use mine like a reference and i look at them often.
As you dont say what you are struggling with - I assume its either side effects or the med not fully working or both, or sometimes the neuro isnt that great too. Let me know what you think and ill look out for your response.
Meanwhile, try not to stress and sleep well x

I have JME, too. I've never 'met' anyone else who has it!

I have JME too! I'm also photosensitive and on epilim. They've tried changing me before but it made the jerks come back strong and I was pregnant at the time so it was safer to keep me on!

Weirdly I feel like I've been having more jerks this summer but not sure why as nothing has changed!

I've fairly recently discovered that noise makes me tic.

The usual triggers still get me, of course, but when there's a cacophony of sounds, it sends me doolally.

I take Lamotrigine for my epilepsy, which has its ups and downs, of course, but it does the job.
I have to take it at night, cos if I take more than 100mg, it makes me feel bizarre; like I'm underwater, sorta thing.

@Aitchoo and @Choccyoclocky

Can I please ask you how old you both were when you first started seeing epilepsy symptoms?

I was about 16-17.

There's two FB pages under the name Xcorpri which are useful.
DM if you wish.

I'll happily chat via text@WeBuiltCisCityOnSexistRoles or FB but would prefer not to on here, but been on a long time.

@Ameanstreakamilewide I remember having seizures in my bedroom around 9 but I didn't know what they were. I didn't have my first public one until 12 which is when I was diagnosed.

I'm also on Lamotrigine, only 50mg.

The noise thing is very very interesting. I actually got some Loop earplugs because I'm very sensitive to noise, maybe it's all related. I need to do some research!

I was 11 when I had my first seizure, and 17 with my second. I got diagnosed then and got put on tegretol which didn't help.
I also have (cos of peri menopause) noticed a pattern between my seizures and my cycle, as I've recently had an increase in seizures.

The fun never stops does it!!!!

Sorry for radio silence, been mulling things over and really fucking fed up in general Thanks for replies, and I'm pleased it's been good for MNers to "meet" others with the same condition (sorry, no good way of wording that sentence really but I tried!)

Interestingly I am also very sensitive about noise and at all times either have my Loops in or proper ear plugs or headphones or a Bluetooth sleep mask! I've not noticed noise being a trigger though, in fact I can't can't isolate any triggers which is frustrating.

7 meds sounds very hard @Aitchoo. I'm on (or am titrating some down because of the cenobomate) max doses of Keppra, lamotrigine, Clobazam as well some other drugs for a different condition. None have worked and I've just titrated up to 50mg cenobomate and had a seizure yesterday so I'm very much at the what the fuck is the point stage! Also it's hard to tell whether the side effects (you know, just the usual, memory loss, SPaG, dizziness, word confusion, just being a zombie in general) are due to meds or inter ictal activity. My consultant thinks both, in fairness my epilepsy team are amazing. I'm going to ring on Monday and talk about it.

I forgot to change to my "epilepsy MN name" so don't want to give outing info (@Undertherailroad PM if you like?) but it's really important to me at the moment to either get this under control, or think about just stopping all meds. It feels like it's just taking my life over at the moment and I can't cope with it any more! I'm sure the epilepsy team will be helpful tho and thanks for replies on here too

I've messaged you. Hope it's helpful @WeBuiltCisCityOnSexistRoles x

Thank you @Undertherailroad I have PMed you

Has anyone here noticed if any AEDs have caused problems with fingernails? I know that sounds random!

Just to update everyone who was kind enough to reply, I have stuck with the Cenobamate. My fingernails have little cotton cots to protect them, three are bad so far and another is looking dodgy I'm going to give it a chance but I really don't like it so far - it's also affecting my speech quite badly - it feels like my brain gets stuck before a word or takes me a long time to say the word, or it comes out slurred. But (crossing fingers) no major seizures since I last posted so I'll stick with it for now.

If anyone has had any speech problems from other AEDs I'd be interested.