Finding the cause changes more than treatment

One of the first questions I asked was: "why?".

I was given a diagnosis of epilepsy, told I needed to take medication, but no one was telling me why it was all happening.

For me, and 50% of people with epilepsy, we will never find out what caused our epilepsy.

And it's not just that knowing the cause = knowing how to treat.

It helps you understand yourself.

It helps you explain to other people.

And without that answer, you can feel so lost.

For me, after all these years, I've stopped focusing on why.

Because at this point, I don't know if that would help me.

But what I do know is that understanding my treatment and my triggers has made a huge impact to my life.

And that's the most important thing.

When I started having seizures, one of the first questions I had was: “why is this happening to me?” why is knowing the cause important?

Because knowing the cause can: Change treatment reduce uncertainty replace self-blame help you explain your condition it can change how you see yourself.

Sometimes it’s...

Structural something physical in the brain sets off the seizures.

E.g.

Stroke, head injury, tumour or scarring sometimes it’s...

Genetic a change in your genes lowers the brain's seizure threshold.

About 30% of epilepsy has a genetic basis.

Source: Complexity in genetic epilepsies, pmc (2023); neurotherapeutics (2020) and sometimes...

We don’t know for roughly 50% of people, the cause stays hidden.

It's the single most common category.

Source: World health organization (2024); epilepsy action unknown doesn’t mean it’s untreatable.

Many people with epilepsy can still control their seizures even if they don’t know the cause.

This changes the question to: “what’s the best treatment for me?”