Cenobamate

[NewGoldie]

Hi all,

I'm taking a high dose of Lamotrigine and it's not working so my neurologist has suggested Cenobamate. Does anyone take both and it's working or the side effects aren't too bad?

Thanks

[GillyA]

I’m not taking it at the moment, but my neurologist is singing its praises and saying it’s the next step if my current combination doesn’t work (lamotragine and Levetiracetam both high doses). He says it’s doing really well for other patients.

[Denman1 in reply to GillyA]

I am taking 200mg as well as high doses of Levetiracetam and Lamotrigine. Going on to Cenobamate allowed me to come off Lacosamide which I had a lot of problems with.

I found my balance and speech were badly affected for a few weeks. The one side effect that still bothers me is that I very often cannot think clearly, but the seizures have improved a great deal.

I would prefer to try a lower dose, but can tolerate the 200mg.

It does seem beneficial for most people, but the side effects can be very difficult for some. It is certainly worth trying.

[NewGoldie in reply to GillyA]

Thank you both, that's so useful to know. I'm glad it's working for you Denman1 and that it's another option for you GillyA.

[Tenor000]

I take cenobamate 100mg with briviact 75mg morning and night that seems to work

[NewGoldie in reply to Tenor000]

Fantastic, thanks Tenor000 and I'm really pleased it's working for you

[johnearthman1]

I take both Lamotrogine and Levitiracetam , and that has kept me seizure free fo 10 years. Started with just Lamotogine which reduced number of seizures, but addition of Keppra did the trick. OK, a few side effects such as irratability and sleep interruptions. But hey, I can live with that and not have seizures and being able to drive again.

[NewGoldie in reply to johnearthman1]

Thanks johnearthman1, congratulations for 10 years and the freedom from driving again is a another big plus.

[carlija2]

My son is on lamotragine, epilim and clobezam. He was still having seizures so his neurologist started him on Cenobamate . His dose was gradually increased to 100mg over a few weeks and although helped the seizures 100mg was too much too soon. He was very spaced out so we reduced back to 50mg his seizures definitely improved and we have just moved up to 75mg. It is definitely seen as the new wonder drug . I think it is good and everyone is different but think my sons neurologist increased it to quickly. I refused to let him have 100mg so quickly. So monitor your side effects and speak up if you not happy. It definitely improved my sons seizures . Good luck Jackie Nickys Mum 👍

[NewGoldie in reply to carlija2]

Thanks for your helpful message Carlija2. My neurologist has started me off on 12.5mg today and I've been advised there'll probably be an initial allergic reaction (rash and/or flu-like symptoms) and then it's increased slowly.

I'm really pleased this has improved your son's seizures x

[Sjh00]

My son has been on cenobamate started in August last year after years of no seizure freedom he is 23. He is now on 250mg cenobamate under Queens square in London and it his been brillant for him. The only side affect we get is constipation which he has to take daily meds for. He is seizure free now apart from when unwell we have a 10 day course of clobazam. He is still on Lamotrigine 150mg and perampanel 4mg ( lowering that slowly) and has a VNS inserted but this really has been life changing for him so far 🙏🤞🤞good luck to you all xx

[NewGoldie]

Thanks for your useful message Sjh00. I will look out for this side effect too...!🙄

I'm very pleased this has made such a positive difference for your son x