We fight to improve the lives
of everyone affected by epilepsy

Gillian

“I had my first tonic clonic seizure in March 2018, when I was asleep in bed. I realised how serious things were when there were two paramedics standing over me in my bedroom putting an oxygen mask on me and putting lines in me ahead of going into hospital.

I was advised the seizure could be a one-off, but I was referred for an MRI and an appointment with the First Seizure Clinic. Unfortunately waiting lists in Northern Ireland are not good, even waiting for an emergency appointment was too long. I had to go private for an MRI scan, an expense my family didn't need at an already uncertain time. I wanted the MRI done sooner rather than later, as all eventualities went through my head: did I have a brain tumour, did I have cancer?

I had my appointment at the First Seizure Clinic at the Royal Victoria Hospital, Belfast, about four weeks after my seizure. My neurologist took the time to listen, ask and answer questions. She referred me for an EEG because the results from my MRI had come back clear.

Then in June that year, I had my second tonic clonic seizure, this time in the shower. I was taken to hospital again. The day before my second seizure I had an aura, I didn't know it was an aura at the time. I was in a work meeting, it stopped me in my tracks and petrified me. The only way to describe it was a lot of bright lights and images moving very quickly across my eyes. I had been experiencing the same type of aura for several weeks leading up to my first seizure. They were happening in my sleep and they used to wake me. I was due to take annual leave the week following my first seizure, so I put the auras down to being tired and taking that much needed time off. Again I didn't know these were auras.

After my second trip to A and E I was prescribed Levetiracetam/Keppra. I am very thankful that the side effects didn't last too long, and I currently don't experience any side effects.

My EEG appointment was in August 2018, five months after my first seizure. It confirmed I had epilepsy. Although I knew this was most likely going to be the case it left me miserable. I was signed off sick in soon after, as I wasn't coping with everything that had happened. Having that time off allowed me to get my head around everything and begin to accept my diagnosis. I went along to an Epilepsy Action coffee group session in Belfast and got chatting to a lovely lady called Ena Bingham, Northern Ireland's first epilepsy specialist nurse! Ena was there to answer all my questions and she provided me with a lot of advice.

I had a further appointment with my neurologist in November 2018, where again it was confirmed I had epilepsy. I was given the phone number of an epilepsy nurse who I could talk to if need be. My medication dosage was increased as a precaution as well. I'm thankful my medication has worked from day one, I haven't had any further increase in dosage since then or have had to take a different AED.

From having had two seizures, I honestly don't know what triggered them. But I have made sure following them to look after my head by resting, making sure I get enough sleep and not let stress get on top of me, and by exercising and eating properly.

I have been seizure free for just over two years. Being stripped of my independence when I had to surrender my driving license was very tough. When I got it back after being a year seizure free, I cried my heart out.

Within the Belfast Health and Social Care Trust, anyone who I have dealt with for my epilepsy have been very professional, I have had no issues with them.

Unfortunately, and it's certainly not a reflection on the people I have dealt with regarding my own diagnosis and treatment, waiting lists within Northern Ireland are too long. Maybe there are issues with staffing, health service expenditure. The lack of government within Northern Ireland for about three years I'm sure didn't help things either.

I was advised in November 2018 I would have a review appointment within the following year. I am still waiting on that appointment. It’s coming up to two years now.

I find it lonely in a way too. Personally, I feel following a diagnosis an appointment with the epilepsy nurse should be arranged by the neurologist at the time.. I had no nurse assigned to me. I was just given a phone number, to call if I needed. I didn’t feel I should call it. I'm sure there are plenty of people like me who on occasion find it difficult to pick up the phone to chat about your condition to someone who you don't know or have never met. I was left alone with it to a degree. But I was lucky to gain seizure control with Keppra.

I feel so sorry for those in healthcare – they need the support. It needs investment.

In January 2019 I had an appointment with my epilepsy nurse, Beth Irwin. She is a credit to her profession, and like Ena, was able to help with concerns I had at the time that I felt might be related to my epilepsy.

With epilepsy being one of the most common neurological disorders, I feel that our government and health service could do more in educating the general public about epilepsy, and promoting those organisations/charities, like Epilepsy Action that do so much to help people living with the condition.

You can read more about our work on epilepsy services in Northern Ireland here.

Gillian
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