Cenobamate experience

[GillyA]

After an increase in seizure frequency my consultant is talking about changing me from keppra + lamotragine to Keppra + Cenobamate. The only review I can find of Cenobamate are on drugs.com. It does tend to attract negative reviews. The consensus seems to be that it works for epilepsy, but the side effects (especially exhaustion and confusion) can be, pretty horrible to the extent that several have stopped it. I know it’s very new, but I’d welcome any input on experience here, especially positive 🙂

[Sjh00]

Hi

My son who is 22 is going to be put on this medication along side Lamotrigine. They are just upping the Lamotrigine and reducing perampanel at the moment as perampanel on the high dose causing agitation, aggression and depression. We have an appointment today at the National ( London) to talk about introducing cenobamate now. He has mostly focal seizures up the 20 a day and also has a VNS. Everyone reacts different to different medication so anything is worth a try for him. 💜💜💜

[GillyA in reply to Sjh00]

Good luck in Queen Square, they have great epilepsy and other neuro specialists. Although my epilepsy isn’t as challenging as your son’s, they have helped me work through a career where I spend large proportions of my time overseas and I have a linked underlying neurological problem.

Unfortunately if we can’t get the epilepsy under better control my employer is going to stop me working overseas. I’m really nervous about both the fatigue potential and the impact on intellectual capacity. My job is both mentally and physically demanding, whether in London or overseas.

🫰for your son, he really is at the best hospital in the country for neurological issues.

[car67]

Hi Gilly

I started on Cenebomate when it first became available, I was weaned on slowly until I reached 150 mg, unfortunately it didn’t work for me as I could t cope with the side effects and I was still having lots of seizures. I was eventually weaned off and and am currently on a much lower dose, I am currently taking briv, cenobemate , topiramate and locasomide and I have been much better . I do have some side effects of topiremate but there has been a massive drop in my seizure activity, I haven’t had that in a very very long time so I am happy to go with the little bit of side effects.

I have spoken to lots of people who have been successful on Cenebomate, but unfortunately it’s not for everyone as we are all very different.

I hope it all works out for you .

[Charlie90]

hi there

Sure

if I can offer some insight into my own experience I am more than happy to

Here is a summary it’s a bit of a long one sorry

baring in mind everyone’s epilepsy is different and medication effects everyone differently

i had my first tonic clonic seizure 2021 following my brain injury in 2019.

I was admitted to hospital and immediately started on keppra 750mg twice daily

I experienced irritability as a side effect of this I was very snappy with my family.

but looking back it was only mild and some of it could of been caused by the brain injury

And exacerbated by the keppra

My neurologist suggested I switch from keppra to lamotrigine

in all honesty this was my biggest mistake

But all in hindsight

I weaned off the keppra and onto lamotrigine and started having seizures every 1-2 months

they were usually massive tonic clonics

during the day time and resulted in hospital due to injuries and length of time seizing

This continued until the beginning of 2023

I put my foot down with my neurologist

Having to be very assertive and be my own advocate (registered nurse myself and done extensive research,

my doctor suggested we I start back on keppra and monitor any irritability

do now I am currently taking:

keppra 750mg twice daily

Lamotrigine 200mg twice daily

clobozam 10mg once daily

if I am feeling particularly seizurish that day or clobozam 5mg as a rescue med if required

started having focal seizures

last seizure was February 2023

keppra can make me feel irritable add to exhaustion fatigue and brain fog they can make me feel hungover would be the best way to describe it

All symptoms of my brain injury seem to be exacerbated by the AED medication

this is personally something I am willing to accept

if I never have to have another seizure again

I am currently on a very long waiting list to see an epilepsy specialist

I hope this is helpful?