Monday 26 June 2017

'I no longer fight my epilepsy, I live with it'

Kate Maher had brain surgery to remove scarring caused by seizures. To mark International Epilepsy Day, the midwife shares how she took control of her condition

Midwife Kate Maher has been living with epilepsy since she was five. Photo: Clare Keogh
Midwife Kate Maher has been living with epilepsy since she was five. Photo: Clare Keogh

I was diagnosed with epilepsy at the age of five. Luckily it affected me very little growing up. Occasional small seizures were all I contended with. So all in all, life was good and epilepsy caused me little trouble. My immediate family and two close friends were the only people who knew I had epilepsy - I never spoke about it to anyone else. I didn't feel I needed to. There can be an element of stigma attached to epilepsy. As a child, I just wanted to appear 'normal' like everyone else.

After school I received a place in University College Cork (UCC). I wanted to become a nurse and was very determined not to allow epilepsy stand in my way. My seizures began to increase in my 20s. They involved an aura, followed by staring, mixed-up speech, a feeling of paranoia and occasional mild jerky movements. I could have two to three per week, each lasting between 10 to 40 seconds.

I tried to conceal them from family and friends. Once I felt the sensation of an aura coming on, I'd usually try to cover up the seizure or at least not be noticed. In public, the bathroom was a great hiding place. I never liked how the seizures took over my body.

I qualified as a registered general nurse in 2006, and the following year I applied to Cork University Maternity Hospital and trained as a midwife. During my 20s I travelled overseas extensively, regardless of my seizures.

Meanwhile, my neurologist tried me on various different anticonvulsant medications, but no combination seemed to fully eliminate the seizures. Being the patient is so incredibly different to being the nurse. Sometimes as a patient you can feel vulnerable, and epilepsy has taught me many valuable lessons. Those lessons have given me a true insight into what it feels like to be the patient, and assist me every day in my role as a midwife. After qualifying, I kept my epilepsy as under wraps as possible. I was living a double life. Patient today, nurse tomorrow. I was beginning to realise though that my epilepsy was worsening and something had to be done. I felt I needed more answers.

Now in my mid-20s, my seizures were increasing in strength and frequency. So in 2012, after a brain scan, I went to London's Neurology Hospital and arranged an appointment privately. I wanted a second opinion. I brought my MRI scan reports with me.

The consultant I saw noticed a subtle scarring of my left hippocampus, which is a major part of the brain. This was the first time anyone had noticed a scar. I was, he said, a classic case of temporal lobe epilepsy.

I had my first tonic-clonic seizure in 2013. Thankfully my partner Joe was with me at the time and called an ambulance. After a few days off, I returned to work and continued working full time throughout this period. I used to have occasional simple partial or complex partial seizures within my workplace.

Working helped to take my mind off things, gave me a reason to get up each morning and provided a good social outlet. Over this period epilepsy and seizures were taking me through feelings of denial, frustration, vulnerability, sadness, anger, helplessness and powerlessness. Occasionally, I attended a counsellor and she helped me come to terms with my epilepsy, and my life.

By now, I had tried seven different medications: Tegretol, Lamictal, Keppra, Lyrica, Epanutin, Vimpat and Frisium, but none of them had fully controlled my seizures. I continued to have small seizures every day. As a result my neurologist began to speak about brain surgery, the option of a temporal lobectomy.

In February 2015 I celebrated my 31st birthday within the confines of the CUH's epilepsy monitoring unit. I spent over a week in the unit with 20 leads attached to my head, something all people with epilepsy have experienced with EEGs. I remained in bed for the week, under the watchful eye of nurses, monitors and video cameras. The aim of the unit was to catch a seizure and review it, through the EEG reading and cameras. Providing you have a seizure in the unit.

I had a very eventful summer in 2015. I got married in June, honeymooned in July, and continued to have daily partial seizures. Along with all this, I threw two tonic-clonic seizures into the mix. It kept my husband Joe on his toes, that's for sure. I took time off work in order to rest and undergo various neurological scans and procedures. I had decided surgery was my best option.

On November 2 2015, in the theatre corridors of Beaumont Hospital, I said goodbye to my husband Joe. I was put under general anaesthetic and that afternoon, under the watchful eye of the neurosurgical team, a left anterior temporal lobectomy was carried out.

Later that night I woke up. I felt so relieved to be awake and have the surgery behind me. The following day I was told it had been a success and the scarred area of my brain had been removed. All I could do now, was wait.

Throughout 2016 I recovered at home while relishing in the wonder of seizure freedom. I was graced with seven months of it. Occasionally I'd wonder, 'Might this be the end? Could epilepsy finally be behind me?' Slowly I was being weaned off one of my anticonvulsant medications. It seemed to me everything was working out. I couldn't have asked for more. The weekend before I returned to work we went to see a show in the Cork Opera House. During the show, out of nowhere, I was abruptly hit with a strong sense of déjà vu. The next thing I knew, I was lying on a cold floor, completely powerless, unable to communicate, heavy breathing, and drooling, as my husband and an ambulance crew tended to me.

I was dealing with the shocking realisation that it was back. I'd had another two tonic-clonic seizures. So after a brief vacation, my epilepsy was back with a vengeance.

Since then I have had three more tonic-clonic seizures. I have realised that seizures are potentially here to stay. For the first time in my life, I am beginning to wholeheartedly accept my epilepsy; realising that I'd never fully accepted it, that I had been constantly fighting against it.

That I had been continually pushing it away. Believing it was almost not part of me and that the surgeons had simply disposed of it. Epilepsy is too strong however, too powerful a force.

Living with an occasional tonic-clonic seizure however, feels much easier than the daily struggle I had with complex partial seizures.

Outside of my epilepsy, I continue to live my life to the full, meet friends and work part time as a midwife. I trust in the medical team who watch over me, and know that whatever the future holds, the strength I have built up over this journey will stand to me forever. I am a big supporter of epilepsy research and epilepsy awareness is key to the public gaining a better understanding.

For now, I live in the moment and try not to worry about the road ahead. My husband remains my rock of solid support, along with my family. Over the past five years my life has changed irreversibly, epilepsy has changed me in more ways than I could have ever imagined but I wouldn't change a second of it. It has made me who I am today.

* For this year's International Epilepsy Day, Epilepsy Ireland is focusing on awareness of the condition in the workplace. For more information visit epilepsy.ie

• Epilepsy is a tendency to have recurring seizures

• A seizure is a sudden surge of electrical activity in the brain caused by complex chemical changes that occur in nerve cells

• There are over 37,000 people with epilepsy in Ireland, including an estimated 10,000 who are under 16 years of age

• About one in every 20 people will experience a seizure at some point (a diagnosis of epilepsy typically requires more than one seizure)

• There are 130 epilepsy deaths in Ireland per year - half of these are due to a fatal complication known as Sudden Unexpected Death in Epilepsy (SUDEP)

- epilepsy.ie

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