Advice required

[Halloumilover]

I had I seizure in 2010 and my MRI was clear, and I’m pretty sure I didn’t have an EEG. I was put on Epilim chrono 1200 mg and have been seizure free since. I went privately so looks like they just signed me off and I never got any NHS follow ups. About a year ago I went back to my GP and asked due to weight gain if there was an alternative medication I could go onto. He referred me to the Neurologist. After a year I finally had that appointment last Friday. The consultant was shocked that my medication hadn’t been review for 13 years (in fact I’ve not seen anyone since). She said the guidelines were to wean you off medication if you’d been seizure free for so long. We did discuss me changing to Keppra.

my questions/concerns are:

I don’t feel safe coming off medication totally and would prefer to switch if possible

My GP who I saw this morning and discussed this with said he thought (but wasn’t sure) I’d have to stop driving if I did the switch of medication

Is 1200 mg of Epilim Chrono a high dose?

I’m so confused and frustrated

Any advise, experience or knowledge would be appreciated.

[9thwave]

Hi , my only experience of trying a switch from Keppra to Epilim was that I had a seizure the first day of the switch so I went back to Keppra.

My consultant said having a seizure couldn’t necessarily be connected to the switch of drugs but I have read that epilepsy is or can be sensitive to drug changes so if you go ahead I would say wise to stop driving for a period.

Officially I’m not sure re the dvla recommendation I think you must check. From memory I think if you have a seizure as a result of a drug change they can reduce the withdrawal of your license from 12 to 6 months but I think it ultimately relies on a discussion between your consultant & Dvla medical to make that decision.

Hopefully you’ll remain seizure free - wish you the best .

[GillyA]

Hi , I was originally started on epilim but like you gained weight. I was switched to Keppra and until recently that has worked really well. I had been seizure free for 7 years and was just starting to consider coming off. When…..☹️

I think you need to consider, with your medics what works best for you. Being on long term medication, with side effects isn’t much fun, but there is the risk of something happening if you stop. One option might be to make the change, but see if you can work on a lower dose, but sadly no easy answers, it’s just try and see what happens.

[EpilepsyAction1 Partner Epilepsy Action]

Whether to stop or change your epilepsy medicine is a difficult decision, as no one knows if you will have any breakthrough seizures.

Many people stay on epilepsy medicine for life for the added security, but some will chose to stop meds after a few years seizure free.

epilepsy.org.uk/info/treatm...

You and your consultant need to look at the risks and benefits of this.

If you need to change, reduce or stop your epilepsy medicine, you might need to stop driving for a period of time. We have more information on these regulations on our website.

epilepsy.org.uk/living/driv...

If we can be of any more help, please feel free to contact our Helpline team directly. You can use our live chat or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pmRegards

Diane

Helpline Team