CENOBATAM

[Denman1]

Is anyone experiencing difficulties with this drug

[GillyA]

I’m not on it at the moment, but my consultant has said it’s the next on the list if my current mix doesn’t work, so I’m very interested in anyone’s experience.

[Denman1 in reply to GillyA]

Hello, it seems to be a good drug for many people but it can also have severe side-effects. You may be one of the lucky ones.

[Sixzero]

Hi, is this the same as cenobamate? I've been on it for about 4 months now. Not sure how successful, at the start it knocked me out and I was incredibly fatigued all the time. The consultant has reduced my tegretol which has helped. I think my partial seizures are less strong but they're probably more frequent. So I'm giving it a bit longer before deciding. But I have heard it's quite a successful add-on drug for a lot of folk.

[Denman1 in reply to Sixzero]

Hello, it is the same drug. I've been on 200mg for 7 weeks and I was taken off Lacosamide at the same time, a drug I had a lot of problems, so it probably took time to get that out of my system. I too suffer from severe fatigue although that has improved a little but it has affected my speech and left me with a 'brain fog'. I think the seizures may have improved but at the moment, the side effects are too severe. I speak to me consultant next month and will decide then.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Denman1

Thank you for your post.

It's good to see people sharing their experiences.

If this is in regards to cenobamate, we shared an article when it was first recommended for use on the NHS that might be of interest. It talks through when it can be considered for use and the reported effectiveness and side effects from two medical trials - epilepsy.org.uk/epilepsy-me...

You can also find a copy of the patient information leaflet here - medicines.org.uk/emc/files/...

I hope you hear from others about this. But do feel free to reach out to our helpline on [e-mail] if you have any further questions.

Kind regards

David

Epilepsy Action Helpline Team

[carlija2]

My son is about to start it , he already on Epilim and Lamotragine . I'm really worried about side effects he has learning difficulties and has limited speech so concerned he cant tell me how he feels 😔

[car67]

hi Denman, I didn’t cope on this on a high dose , I was all over the place, too drowsy, severe brain fog, confusion and affected my balance and coordination, I am on briv, lacosomide and topirmate too, and I was still having lots of seizures , but I’ve now had a reduction right down to 50 mg and it’s worked much better for me.

[Denman1 in reply to car67]

Hello car67 I have been on 200mg for 3 months now and whilst there were initially improvements in my seizures, they now seem a little worse, though possibly partially due to decreasing clobazam at the same time.

Do you find your seizures are better on a lower dose?

[car67]

Hi Denman

My seizures are def much more controlled on a lower dose than of a higher dose, but bearing in mind that I am also on other medication which all play a part too. Has taken 7 years to get to where I am today and lots of medication changes, not sure it’s just entirely the Cenobamate. What I am confident in saying in saying though is the higher dose made me very unwell, and like you it did ease my seizures to begin with , but then they came back with a vengeance but unfortunately brought with them a whole load of side effects!

I still have seizures, as I am writing this I am in bed just come back from work having had a seizure earlier this morning, but they are better. 🙂