Cenobamate

[carlija2]

Cenobamate

Hi My son 34 has epilepsy and is on sodium valporate and lamotragine his seizures are not controlled and his neurologist has suggested Cenobamate. Im always worried about side effects . He has many other issues cerebral palsy severe learning difficulties plus we have trouble getting him to eat so is very small. Any feedback would be very appreciated. Thank you

[EpilepsyAction1 Partner Epilepsy Action]

Hi Carlija2

It's understandable you have concerns about starting your son on a new medicine.

As Cenobamate is one of the newer epilepsy medicines, if you don't hear from others in this community taking this medicine, you may wish to try other ways to contact others.

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...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

Also here is a link to information on Cenobamate that you may find helpful bnf.nice.org.uk/drugs/cenob...

If you wish to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050.

Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[carlija2 in reply to EpilepsyAction1]

Thank you Diane I am a member of Epilepsy Action so will follow the links you kindly provided.

[car67]

hi

I have been in cenobemate since it became licensed in uk, approx 4 months now. I am on 150 mg evening, was titrated up. I am supposed to be on 200mg , but tbh I can’t cope with n e more increases, it shatters me out, I become very confused, severe memory loss and the rest. I work 5 days a week full time, and am about to leave as I’m really struggling with the exhaustion, I was hoping this medication was going to be the one but sadly it. I am currently on my 10th medication change and was excited about this medication as I had done so much research on it, but unfortunately have been left very disappointed. I hope it works out for your son.

[carlija2 in reply to car67]

I'm so sorry to hear this. You have to weigh up the pros and cons of any new drug. I hate him trying a new drug but we can only give it a go . I wish you well Jackie

[car67 in reply to carlija2]

thank you

[Denman1]

I started titrating Cenobamate as several drugs had not controlled the seizures. At the same time, Lacosamide, which I had a lot of trouble with side effects, is gradually being reduced. At 5mg, I was tired all the time, becoming slightly better over 100mg and 150mg. I start on 200mg tonight . Not sure how it will work out but staying optimistic it can help with seizures. I hope it works for other people.

[carlija2 in reply to Denman1]

Thank you. My sons seizures are getting worse he on lamotragine and sodium valporate they want to add Cenobamate. They say won't stop them but reduce frequency and severity . Good luck with yours , do hope it helps you .