What does this mean?

[Freda]

My daughter Carly has been diagnosed with Focal Onset (temporal lobe) Epilepsy. We are still fairly new to epilepsy and don't understand the diagnosis.
If anyone can shed light as to what this means we would both be very grateful.

Thanks or reading this post. x

 

[Nakamova]

Focal Onset is the new terminology for what have previously been called partial seizures. (I still tend use the old terms since they are a bit clearer.). They are seizures which initially start in one part/side of the brain. In your daughter's case, they start in the temporal lobe. A seizure that then spreads to the entire brain (generalizes), becomes a tonic-clonic (grand mal) seizure.

In my case, there is no focal onset phase -- my seizures start with the whole brain involved. There's no prelude just the tonic-clonic seizure.

You can read about the new terminology here:
https://www.epilepsy.com/learn/types-seizures/new-terms-seizure-classification

 

[CQ:)]

Yeah I think it is just the new terminology for partial seizures.
I hate how they keep changing the terminology it gets confusing lol.
I took tonic clonics as a baby and toddler but back in the 70s & 80s they were grandmals.

I was 21 years seizure free and my seizures returned in 2002 when I was 24, I was told I had left front temporal lobe epilepsy, I mainly took simple / complex partial.
I had surgery in 2011 and was 2 years seizure free until I started having strange events again in 2013. I had a VEEG in 2015 which showed seizure activity and the neuros told me I was having focal seizures. When I asked them what that was they said it’s just basically the new terminology for partials.

My seizures have changed over time, so when I go to my follow ups and I describe to my neuro what happens he says yep that’s a focal seizure then explains in more detail the type of focal seizure it is. At our last follow up I said I can’t get used that I rather the old terminology simple/ complex partials lol.

 

[Freda]

Thanks Nakamova and CQ for your replies, they explain just what I wanted to know. I don't know why names of things get changed so much these days, I'm sure it confuses many people for no reason.