MY STORY

My name is Louise and I have had epilepsy since I was sixteen months old. Then, in October 2003, a miracle happened. I had surgery and since then I have not had one seizure.

At sixteen months I had a long uncontrolled febrile convulsion that lasted for about one and a half hours, and I was transferred to Brisbane by ambulance from the country town we lived in. A few days later a rash appeared all over my body, and I was diagnosed with Roseola, a condition which mainly affects very young children.

When I was two and a half, I had another lengthy febrile convulsion, and was again transferred to a Brisbane hospital, under the care of the paediatric neurologist, who I still see. While I was still in hospital I had a CT scan to see if the seizures had left brain damage, fortunately there was none. It was then that I began the medication for seizures twice daily that I still take today.

At four and a half, I began to have complex partial seizures with visual hallucinations, and I would be unconscious for two to three minutes. They began with an aura of a sensation like butterflies in my tummy. These occurred several times a day, upsetting me at times, as at that age I did not understand what was happening. I interpreted it as a nauseated feeling, rather than butterflies. However as I did not know anything different, I saw it as normal and learnt to grow with it.

“Mummy, I’m sick again!”

My paediatric neurologist want me to have an EEG and because it required no needles, I was happy to comply. I began primary school and attained above average marks in all subjects. When I was seven, I began having tonic clonic seizures, every six to twelve week, lasting seven to ten minutes. I didn’t understand what was happening to me. I knew they were called seizures, but what were they? Why was I dizzy? Why was I getting all these headaches?

I had an MRI scan to check for brain scarring or damage, the results came back clear, showing no abnormalities. However in the long run, this was a significant mistake.

From ages nine to eleven, the visual hallucinations seemed to fade, and I had no more convulsions, but the complex partial seizures were still occurring. Ten days before my twelfth birthday, the tonic clonic seizures returned, stronger than ever.

It began with an auditory hallucination that I had never experienced before. I couldn’t talk, and had an extremely loud buzzing in my ears. The next thing I knew I work up in hospital. That seizure lasted for three and a half hours, and I was being treated by our local GP, with guidance by phone from my Brisbane specialist. I was close to being transferred to Brisbane by helicopter. My life was never the same after that seizure.

I had tonic clonic seizures every six weeks or so, and complex partial seizures frequently, up to six in one week, making it hard to concentrate on my schoolwork. Another MRI scan showed scar tissue in the left temporal lobe, which had probably been there since the first ever seizure I had, when I had the Roseola. The option of surgery was now considered.

I started High school and it was not what I expected. It was a package that came with my peers- bitching, flirting, insults, backstabbing, rivalries, assignments, exams, studying and much much more. Later that year I had a PET scan and two video EEGs.

I was getting sick of being bossed about, I felt like I was a guinea pig, and just wanted to run away fast. I hated my life. I had video EEG filming for about five days, in the Mater hospital, and two tonic clonic and several complex partial seizures were recorded. Later that year they said I was not suitable for surgery, as I was having seizures from both sides of my brain. I felt relieved, I just wanted it all to be over.

My original paediatric neurologist was not convinced of my unsuitability, and wanted a second opinion, so I was referred to yet another paediatric neurologist, a professor from the Sydney Children’s Hospital. I was having a complex partial seizure almost every morning, at breakfast. Afterwards, I would not know the day, time or where I was.

I went to Sydney in October 2002, to have further tests. I was distressed that things couldn’t just be left the way alone. I didn’t need something this big to challenge me. In Sydney with my parents, I had a number of tests including another video EEG, another PET scan, another MRI scan, a neuropsychology test and a visual fields test. After two weeks of tests I was told that I was a suitable candidate for surgery, and the risks were explained to me. I was told it would take place within two or three months.

The operation took six and a half hours, with no major problems. All the scar tissue was removed, and now we play the waiting game.

I stayed in hospital for ten days and didn’t go back to school full time for the rest of the year- a period of about five weeks.

Some time later I was diagnosed with depression as an after effect of the surgery, and was put on medication for it.

Things changed as time passed and I started to get better slowly. The journey will never be over for me. But I won’t always be having seizures, that is the reward, and hopefully I can help others in the future who may be going through the same thing.

I would like to thank all the many people who have helped and supported me and my parents over the years, especially the medical team that contributed so much effort and dedication. Epilepsy is a common condition, and I hope my story will be helpful and consoling to many people in the future.