Cenobamate

[davidmdo]

Hello, I was wondering if anyone has been prescribed Cenobamate, I tried different medication to control epilepsy and sadly it still not under control and enduring the side effects. Cenobamate seems to be new on the market. I’ve been taking Topiramate and the side effects were very bad. Brain fog being one of them. It’s not very clear from any documentation I found what are the side effects of Cenobamate. Is anyone one taking it? How is it going with it? Side effects? Is it well tolerated?

Many thanks

David

[Paula-38]

Hi davidmdo,

I'm so sorry to hear that.

The medications I have had when I was little were Diazepam, Tegretol and Mysoline until I was 10. Then they changed me to my current two medications Phenytoin and Clonazepam and they have made me a good 29 years free now.

So, no I've never had Cenobamate.

[laurenoc]

Hi David,

Sorry to hear about your side effects. I was just wondering how long it took for the side effects to start on topiramate for you and what dose they started on as I am currently on 50mg a day and feel fine but was very concerned when my neurologist told me to go on these after reading the side effects!!

I hope you find the right medication for you!!

Thanks

Lauren

[davidmdo in reply to laurenoc]

Hi Lauren. I have been on much higher doses than you are currently on. Started with 50mg twice daily which then went up to 75mg twice daily. For 18 months I was on 100mg twice daily. When we started to reduce it it we did that over 12 months. As you can see my dose was much much higher than yours so you should probably not be concerned at this stage.

[HSE_Survivor]

Hi David,

I take Keppra , which I know isn’t the same as your Cenobamate, but I just wanted to reassure you that it’s not unusual to have to adjust your epilepsy meds after having encephalitis .

I had a nightmare in 2013 with my first year of epilepsy . I can’t remember the name of the medication I was prescribed in hospital . It worked at first , but after 6 months I had a seizure, my hair started falling out and bruises appeared everywhere. Drs realised my body was having a severe allergic reaction to the epilepsy meds it had previously accepted .

Since then I’ve been prescribed Keppra. Many people have terrible side effects with Keppra, but it worked well for me until 2020, when I started having multiple seizures again . Apparently my body had got used to the prescribed dose, and the seizures stopped when the dose was increased .

Earlier this year I began having ‘Todd's paralysis’ as a result of epilepsy . My Keppra meds were increased again, and I feel well at the mo, as long as I pace myself . I’ve accepted the fact my epilepsy meds will need adjusting/ increasing as time goes on , as my specialist plans to prescribe an additional different medication if the seizures reoccur .

To me it is almost as if finding the best epilepsy medication is like finding what is the best recipe for your brain, and the ingredients may sometimes need changing as time progresses .

Hopefully this Cenobamate will be the right medication for you, David. Good luck 🤞🏻.