My names Jack and I've had epilepsy since i was 13 years old (I'm 19 now). When i was 13 i was sat on my computer just chilling on Facebook and woke up with a terrible headache and my mum screaming because id had my first tonic clonic seizure.
I then tried alot of pills to try and stop my seizures (epilim, clobazam, keppra, vimpat) but nothing seemed to be working as i was still having absence seizures every day and tonic clonics around once a month so then i was put on the list to have surgery on my left temporal lobe to try and remove it,
It took a long time to finally have the surgery as the NHS cant afford many surgery rooms and the tests took long to book but i finally had the surgery in 2015, you can see the surgery on Inside Birmingham Childrens hospital (the series on Channel 4) i was episode 4
Surgery was unsuccessful and i couldn't have second surgery as the scarred tissue was tou close to my hippocampus. i was very unhappy after this as i knew i was going to have epilepsy for the rest of my life.
But in 2017 i was put on the list to have a VNS put in my chest. The VNS is a machine which is about the size of a 50p coin and sends electrodes up to your brain every 3 minutes for 30 seconds, only problem with that is when the electrodes are going up my voice changes which really annoys and embarrasses me.
But as i am writing this the VNS has finally made a change for me, im still having absence seizures but today is the first day in 7 years i haven't had a tonic clonic seizure for 3 months, i highly recommend the VNS if you cant have surgery as its the next best thing.