I have epilepsy, ask me anything about living with it

[eggwyneth]

I have epilepsy, ask me anything. Anything at all!

Are you medicated? How often do you have seizures and what types?

How long does it take you to recover from seizures and what helps you to recover faster?

How do you behave differently because of your epilepsy eg avoiding certain situations?

What diagnosis do you have and when were you diagnosed?

My husband is epileptic, starting with tonic clonic seizures really late in life.

Do you have a partner, do they witness your seizures, does it disturb them?

What anti seizure medication are you on?

Have you tried more than one?

My OH is a different man altogether on Briviact after lamotrigine (gave him heart problems) and leviteracetam (failed to control seizures) but it's expensive and the NHS can try to avoid you knowing about it.

Yes I'm medicated. I'm on cenobamate & lamotrigine currently but have been on oxcarbazepine and briviact before.

My seizures are focal impaired awareness and don't really have a set timing or frequency because they're usually triggered by high emotions.

If I'm at home I try and go to sleep and I'll feel better when I wake up, otherwise it's a bit of a struggle to try and recover. I'd say the biggest thing I try to avoid is public transport, my parents still drive me lots of places which I'm really grateful for

I'm diagnosed with epilepsy and I was diagnosed at 10, a year after I started having seizures.

Cenobamate and lamotrigine have worked best for me although the lamotrigine does trigger bad headaches. Briviact was absolutely horrible.

How did BRIVIACT make you feel?
Do you have an alert dog?

do you know when you are about to have a seizure? What does a seizure feel like or do you not know it is happening? Thanks for started a really important thread too.

I'm sorry you haven't got a side effect free solution.

Do you have children? How does the epilepsy impact on your ability to care for them?

Briviact made my mental health awful, made me feel horrible and unmotivated and I just couldn't do anything. I don't have a dog but I do have a budgie who can tell when I have seizures because he starts chirping super loud!

Lots of people do know when they're about to have one but I don't, I don't get any sort of feeling before it. My seizures are triggered by strong emotions so I can sort of predict when they might happen - after a busy day, if I've been travelling, that sort of thing, but I don't get a warning right before.

I'm unconscious during my seizures so I'm not really sure how it feels but the whole process does make me feel sick.

Would you be able to explain a bit more about your response to Briviact please? Our 4 year old (diagnosed with focal epilepsy) is on Levitracetam but is extremely aggressive. We’ve asked for him to be moved to Briviact. But he is so young that trying to get him to explain how he feels with the epilepsy and / or in response to medication is just not possible. Your experience would give us some helpful insight.

Do you have any other diagnoses alongside your epilepsy?

Did you have a head injury prior to getting epilepsy?