epilepsy

[Agrif197]

how many seizures is too many over a year?

im wondering if my medication is working?

[Pocketville]

Hi Agrif197I've had over 50 in this last year until September when they added in lacosamide or vimpat to my kepra (1250mg kepra x 2 built up on vimpat to 200mg x2 daily).

Been absolutely awful, had a seizure in the kitchen on Xmas day, had a seizure in the bathroom and smashed my head on the wall on new years eve, spent new years eve and new years day in hospital, then on Monday just gone, collapsed in the bedroom (hit head again) and according to my notes had a cluster of seizures (about 12) over 24hrs.

Im still in hospital today, saw neurologist today who's taking me off vimpat (slowly will be mid Feb when I'm off) and going to try something different, explained that it's hit and miss with meds, works for some but others. I would suggest speaking to your neurologist, maybe they can change your medication. Hope you stay well 👍

[EpilepsyAction1 Partner Epilepsy Action]

Hi Agrif197

Thank you for your post. Everyone's epilepsy is different. Frequency of seizures will vary from person to person.

Ideally, you and your epilepsy team should be aiming to have your seizures fully controlled with epilepsy medicine.

For 5 out of 10 people with epilepsy, the first epilepsy medicine they try will stop their seizures. It’s not possible to say how long this will take. But for many people, it happens quickly. For others, it takes longer.

If you’ve reached the maintenance dose of your medicine but are still having seizures, speak to your epilepsy team. They might recommend trying another medicine.

Around a third of people with epilepsy have seizures that don’t respond well to epilepsy medicine. They continue to have seizures even though they have tried 2 or more different medicines.

We have further information on our webpage epilepsy.org.uk/info/treatm...

Communicating with people on here and through other social media, is a really good idea. So I hope you hear from others in this community soon.

If you don’t, 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.

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

[car67]

hi Agrif

I have approx 3 seizures a week, but everyone’s different and it depends on what seizures you have. I have refractory epilepsy so medication doesn’t work for me, I am currently on my 10th medication change so another med with no results. everyone is different , you may just have find the right one for you. I hope you do and best wishes.