When coming of carbamazepine did your seizures return?

[Pink1666]

I am coming off carbamazepine after being on it for 3 years and was wondering whether if you have come off carbamazepine you got seizures returning or not

[Matt6096]

I was titrated off of carbamazepine last August after 20 years on it due to low sodium levels. I was then put on Kepra instead which unfortunately made me quite unwell so I stopped taking it, I thought I’m doing ok so would try without any. I managed well for nearly 6 months but unfortunately ended up having a tonic-clonic seizure. I have since been put on lamotrigine which seems to be working well, 🤞, it continues that way. This doesn’t mean that this will happen to you but I though I share my experience, I hope it helps.

[sammy13]

I came off carbamazepine, in january this year. I was weaned off for 6 months. After being completely off the drug, i had a seizure a few weeks ago. The first one i have had in almost 5 years. Now lost my driving license again. Saw the epilepsy nurse, i am now back on carbamazepine. Will take me about 6 weeks until on my full dose again. Unfortunately i think this is a drug for life for me. I dont want any more seizures. Hopefully you can come off the drug without a seizure. The drug is a poison for the body.

[Chris216]

I have taken carbamazepine for 20 years. Every time I lower my dose I get my seizures back. I have tried 6 different medications with it but nothing else helps me.

[Mybraveface in reply to Chris216]

I also took carbamazepine for over 20 years as it controlled my seizures. I stopped it due to mounting side-effects, asked for a modern version of it as it has been around since 1950s. Initially Levitiracetam, then Brivaracetam were tried with awful results. I found a video explaining clearly how different types of AED drugs work. From that I suggested to my neurology consultant I needed a sodium channel blocker like carbamazepine, but a more modern version.

I'm now on lacosamide, which does the same job as carbamazepine for me, but without the side-effects. This might possibly be an option for you.Please see my post "This is a must see video for anyone taking epilepsy medication " !!

youtu.be/rWSkwNfG2bc?si=isf...(Not working as expected?)