Seizing My Second Chance

Erika Dillon is a native of Cornwall, married to an Irishman and living in Australia. On a trip to Ireland this summer to visit family and friends, Erika told Brainwave about her experiences with epilepsy, having surgery and her hopes for the future. We met Erika on the first anniversary of her epilepsy surgery.

Brainwave: Thank you Erika for sharing your story. When did you first develop epilepsy?
Erika: My first memory of epilepsy is six years ago, when I was in my early thirties being in the bathroom at home in the middle of the night. There was a woman banging at the door telling me to come out immediately or I would be sectioned! I had no idea what had happened but my tongue was a bit sore. Eventually, my husband Dave got me out. The woman at the door turned out to be an ambulance driver. You'd think you could expect better from the emergency services! I just had my first tonic-clonic seizure and I'd woken Dave up by kicking him.

So what happened after your first seizure?
I spent five days in the hospital where they did various tests and diagnosed me with epilepsy. I was given medication and told to come back in a week. There were no more tonic-clonic seizures and I thought that meant I didn't have epilepsy any more. However, I started to have these "zoning out" moments which I didn't know about but which other people would notice. I was then diagnosed with complex partial seizures.

What did you know about epilepsy at the time?
I'd heard of epilepsy, but it was totally alien to me. My family were equally shocked. My mum said things like "We've never had that before, where did you get it?" and "It's not from my side anyway". To this day, I have no idea why I developed epilepsy, but in retrospect I remember some things that happened when I was younger that may well have been complex partial seizures as well. For instance one day I had this feeling of getting smaller and smaller and I couldn't complete my sentences properly. This lasted for about an hour but I never did anything about it and it never happened again. When I was a child I remember my vision would be affected. I would see something spreading like a cloak across my field of vision and I would get scared, but I never told anyone about it. I also used to complain about strange smells and déjà vu regularly.

How did you react to your diagnosis?
I spent the first few years just coping with medications, going from one to another trying to find something that helped. I had to learn to deal with the seizures and also the horrible effects of the medication like rashes, tiredness and inability to function. I was little more than a zombie for a long time and I've lost a lot of memories from that period. Seizures were occurring more often than I realised, often during sleep, and the area of the brain they were occurring in meant my memory was badly affected. We came to Ireland for my friend Helen's wedding but I have no recollection of the trip.

Did epilepsy get in the way of personal relationships?
My diagnosis was terrifying for Dave but he's been a rock from day one, never complaining. His only frustration was my stubborn streak which made me keep going doing things and not looking after myself properly.

What bout work and hobbies?
I trained as a photographer and I have a real passion for photography but for years following my diagnosis, I was unable to follow my dream. I just couldn't pick my camera up. Since my operation, I've discovered a new lease of life, have gotten my energy back in bundles and have resumed where I left off with the camera. When I picked it up for the first time, two months after my operation, I immediately burst into tears, realising for the first time how epilepsy had stolen my life.

Was taking control of your epilepsy difficult?
To be honest, I was a bit frustrated with my GP and even my neurologist. They were both very nice to me but I wasn't getting anywhere with medication and it often felt like I was just going in to them for a chat. They would write a prescription and tell me to come back in six months. They couldn't tell me why I had epilepsy or give me any assurances about getting it under control. They were doing their best of course, but that didn't meant I felt less frustrated.

At what point did epilepsy surgery become an option?
The seizures began to worsen and new aggressive symptoms began to occur during them. After one incident when a seizure caused me to shout and scream at a passer-by on the street, my doctor told me he couldn't allow me to fly back to the UK in case something similar would happen on-board. Incidents like this made me realise that there was no other option but to go for surgery, provided that I would qualify. I went for a sleep study and reduced my medications. I had multiple seizures during the study and the doctors decided I was suitable candidate for surgery. I was told that there was a possibility the operation wouldn't work. The odds of my seizures stopping completely were low. However, I had decided that life couldn't carry on as it had been so there was no doubt in my mind that I had to have the surgery. It was scary in the 6-month build up and to be honest, I felt like backing out sometimes but Dave was always there to reassure me and convince me to go ahead.

So how did the surgery go when you finally got to go in?
Dave works on gas drilling rigs and was away at the time so I was grateful to Helen when she decided to give up her holidays to fly from Ireland to be with me. Since we first met in 2002, we've been great friends. The surgery was postponed twice (once on the table) but at least I had Helen with me to keep me calm and occupied. It also meant we were able to do all the touristy things together in Sydney while we waited for it to be rescheduled. After the surgery, I was out of hospital within 48 hours and immediately noticed a difference in myself. My medication had been reduced a few weeks before surgery and when I came out, I didn't feel muddled anymore and I was energetic and cheerful again. I was out walking and shopping within a few more days and haven't looked back.

Have there been any negative effects?
I haven't had a seizure in a year. Apart from the 32 shiny staples in my head and the fact that I can now officially call myself an "airhead", the biggest problem I have had since the operation is the change in my sleeping pattern. My short term memory is still not 100%, especially around numbers and time but it is improving. The doctors warned me about headaches, depression and losing peripheral vision but thankfully none of these issues ever materialised. It's been almost an entirely positive experience. I've even developed an obsession with eating apples.

How has life improved for you in the past 12 months?
I want to get up in the mornings as early as possible and just get on with doing things. I'm back going to music gigs again after years of not being up to it. I feel like I have a life again rather than just an existence and people notice it as well. I've considered learning to drive for the first time, but I think I have too much energy for sitting in a car when I could be walking or cycling!

Have you had to adjust to being seizure-free?
One of the big things I've had to adjust to since the surgery is remembering that when I feel down or tired or irritable, that doesn't necessarily mean that I'm going to have a seizure. It's been hard to let go of that worry but it's a year on now, and I think it is time to move on. Given how fortunate I've been, it would be shameful if I didn't. People don't always get a second chance.

What would you say to people considering or waiting for surgery in Ireland?
I think it is important to consider how your life is now, and compare that to where your life could be with successful surgery. If you are at the point where surgery is being considered, then your life is probably seriously affected by epilepsy and you are likely to be unhappy. So you must decide to either carry on that way, or to give yourself a chance of a better life through surgery. I know my story has been very positive and there is another side to epilepsy surgery as well. In my opinion, the risk is one worth taking but it is a decision every in individual must make for themselves based on their own situation.

What are your hopes for the future?
I've decided since my surgery then that I want to do more for epilepsy. We need to shout it from the rooftops! Epilepsy is not understood, researched or spoken about enough. I also want to get my photography career back on track and I'm currently working on a series of photographs documenting different stages of my recovery.

How do you think the public views epilepsy at the moment?
A lot of people still think of a person with epilepsy as someone shaking on the floor, frothing at the mouth. They don't see the effects it has - in my case the tiredness, the worry, the effect on relationships, memory problems and work. I remember writing in my diary a few days after the surgery how I feel it is just not right that a disease which takes so much from people's lives is so silent and so hidden. Is it any wonder that some people don't admit to having epilepsy in case it affects their job or how other people view them?

How can this change?
People with epilepsy need to do what they can to change perceptions. If you've come through the other side and feel up to it. I think you shouldn't be ashamed to come forward and talk about it. I also don't think there is enough information out there. For me, it was so hard to get information and very few people to ask. Doctors can't be a reservoir of information for everyone but no-one ever pointed me to patient organisations or to online support forums. Doctors should always put people in touch with patient organisations or support groups