Wondering people's Xcopri (cenobamate) experiences

[Jazzy-fay]

Hey all, I am just looking to hear other people's experiences with xcopri (cenobamate). Their opinions on it, reactions to it and what doses they are on.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Jazzy-fay

Communicating with people on here and through other social media, is a really good idea. So I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support epilepsy.org.uk/talk-and-su...

Regards

Diane

Epilepsy Action Helpline Team

[Caesard]

Well, I've had the same question on my mind. After seeing those really nice studies back in 2020 and following them through till 2022 I've wondered if there are no patient reviews to understand the clinical practice and efficiency of cenobamate.

Unfortunately, of all the sources I've checked (and checked I have!) there seems it's not so much real life experience with cenobamate on the forums, drug reviews sites, clinical practice blogs, etc...

Might be the rather prohibitive cost of it and reluctancy of health care systems to adopt it...i have no clear understanding of the reasons why it's not more present in the forums.

Discussing it with a specialist MD, one year ago, his position was that indeed, while it looks good I should let it sink in in the practice for some time befire making a decision.

Well, considering the clinical practice evidence, it seems for the time being it's floating instead of sinking

But we shall see....

This is the latest study I've seen for cenobamate, covering a 48 month treatment results.

n.neurology.org/content/99/...

[Jazzy-fay in reply to Caesard]

Hey Caesard,

Like you said, "we shall see". Maybe it is a slow working wonder drug😁 Thank you for your reply, if you come across any more info let me know.

Jazzy-fay

[Caesard]

Sure, will do!

[car67]

Hi

I started Cenobemate in November , my 10th medication change! I was titrated up fortnightly, I stopped at 100 mg but but just started another increase yesterday as stil having daily seizures. However they have reduced from 6 a day to 2 or 3 a day on average. Main side effect is severe tiredness, constipation and confusion, I work full time and to be honest it’s been a real struggle. It has decreased my appetite, I am not sure if that’s because my memory is so poor that I just forget to eat! 😳The medication gets delivered by post as it’s new and problems with funding and so forth, the neurologist or nurses call ever fortnight to specifically discuss the medication and side effects and further questions please message me and if I can help you I will do my best.