It’s complicated

Getting diagnosed made me nervous, yet happy I was getting to the bottom of what was happening. The neurologists couldn’t work out what it was at first. I was having seizure activity but not enough to say if it was or wasn’t epilepsy. It took loads of different EEG tests to find out what it was.

I was 2 years old when my seizures started but I got diagnosed when I was 4. It was kind of a relief knowing that it was epilepsy. But it was hard that it took a very long time to get diagnosis.

I also got diagnosed with frontal lobe epilepsy when I was 19 years. The specific diagnosis took a lot longer as it was so difficult to capture it on the EEG. A visiting doctor from London arrived he said lets try moving the wires and this is how I was diagnosed with frontal lobe epilespy. If it hadn’t of been for the visiting doctor that specialised in frontal lobe area, that might not have got diagnosed.

On top of the epilepsy I was diagnosed with learning disabilities, Asperger’s syndrome and dyspraxia (DCD).

The neurologist said I have a complex type of epilepsy called frontal lobe epilepsy. I don’t have just one type of seizure. I have mix of seizure types, it’s really complicated. The seizures I experience are myoclonic, absence, tonic clonic and focal impaired awareness seizures.

What I’ve learnt from this type of epilepsy is that it’s cruel. It’s unpleasant and distressing to watch, unbearable and heart-breaking for the people and I wouldn’t wish it on anybody.

It’s terrifying knowing there something wrong with you knowing it going to strike, but you can’t stop it. Yet I think to myself you shouldn’t let it stop you from doing things you love or what you want to do – my ability is stronger than my disability.