independent

Thursday 17 April 2014

'I had up to 40 seizures a month'

how it feels . . . to have epilepsy

'I had up to 40 seizures a month'

Emma Farrell (26 ) suffered up to 40 seizures a month until she found the right drug for her

Deja vu: Emma felt her seizures coming

'I've had seizures for as long as I can remember. Originally it was believed to be migraine and vertigo.

"My seizures usually began with a sickening deja vu feeling – the sense that this had happened before.

"I'd get a metallic taste in my mouth and I'd suddenly be unsure of where I was or the date or time.

"I wouldn't talk for several minutes and from an onlooker's point of view I'd be completely out of it.

"However, a million things would be going through my mind. Afterwards I'd have a migraine for the day and feel very sick.

"When I was 17 though, I experienced an episode that led to my diagnosis of epilepsy. After sitting the first paper of my Leaving Cert, I came home and went shopping with my mother.

"In the car I had a seizure.

"This time it was different – when I came out of the seizure I couldn't see.

"This hadn't happened before. I had no vision. It was terrifying.

"Mum brought me to the emergency ward of Beaumont Hospital. There I had a number of other seizures.

"They told me that what I was having were epileptic seizures. I was diagnosed as having epilepsy.

"Tests were carried out and I was put on medication. I was admitted and I stayed in hospital for about a week and a half – I sat most of my Leaving Certificate exams in bed there.

"After I was discharged, they tried a number of different medications but none of them worked properly.

"I was diagnosed with Refractory Epilepsy, which means that the available medications don't work because you're either allergic to them or the side-effects are too extreme.

"My seizures became very bad over the next year.

"I'd gone back to school to repeat my Leaving Certificate but I was having about 40 seizures a month.

"Then I got an extremely severe seizure called Status Epilepticus – I stopped breathing and was admitted to hospital again.

"I was 18 at this stage and it was decided that I needed surgery, so I went on the waiting list.

"In June 2005, I was about to repeat my Leaving Cert examinations when I was called for the operation.

"I had an operation on my right temporal lobe and my right hippocampus, and following the surgery I had six weeks without seizures.

"But then the seizures came back – they were as bad as before and I was still having about 40 of them a month.

"I thought they were more frightening than before because now they came without any warning. The doctors tried other medication, but nothing worked. Then in 2008 a new kind of drug came on the market – and it worked!

"Within two or three weeks my seizures had reduced significantly and after two months they disappeared completely.

"I take this medication every day now and it's the only drug that works for me.

"I joined Brainwave's campaign to exclude epileptic drugs from a proposal by the Government to substitute generic drugs.

"If a generic drug didn't work for me, it could result in a seizure which could drastically change my life.

"If I got a seizure again it could signal the beginning of more seizures.

"This would take away my independence and leave me unable to drive.

"I sing in a choir, and if the seizures came back I couldn't perform on stage. It would affect your work and social life also – you'd literally have to be 'minded' all the time.

"I firmly believe that people with epilepsy should request their GPs to put a note on their medication prescriptions saying 'Do Not Substitute'."

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