It was December 2007 and I had been suffering with awful, constant headaches for the past 2 years and had been going back and forth to the doctors who unfortunately just gave me migraine tablets. I thought maybe I needed an eye test so as a last hope I booked in at the opticians.
When the optician looked into the back of my eye he froze for a second then said ‘I’m going to have to refer you to the hospital immediately’. A bit shocked by his reaction I said “ok;” called my partner, Simon, to accompany me and off we set to the hospital.
On arrival the consultants looked in my eyes, then sent me off for a CT Scan and then for an MRI scan. During this time I was given a hospital bed. All a very quick, scary process. Then, a couple of hours later, whilst waiting on my hospital bed a consultant came over and drew the curtains around us, knelt down and held my hand and said ‘I’m sorry Lisa, we have found a benign brain tumor‘. Sounds strange but even though they had found something so harsh I was just so relieved they had finally found something and I was hopefully going to be cured from my constant headaches.
Preparing for Brain Surgery
The following weeks I was referred to Frenchay Hospital in Bristol where a consultant was to operate to remove the brain tumor. He advised all the risks of the operation – death, paralysed down one side, deafness, blindness, the list was endless. It was so scary but so surreal at the same time. My operation was booked for a couple of weeks later. Christmas was in between so I tried to enjoy the festivities with my family without thinking of the operation too much. On the day of the operation I was supposed to go to theatre early but an emergency came in so it put my operation back. I finally went down around midday. It took a total of 13 hours to remove my tumor, taking it into the early hours of the morning. My parents and Simon were called to come down to the High Dependency ward where I was recovering. I’m thankful to say the operation was successful.
A Year Later
It was just over a year later when I began to have slight seizures. At the time not really knowing what they were I carried on with my day-to-day life. Unfortunately one day driving to work I had a major car accident and rolled my car due to having a seizure at the wheel. I was referred to a specialist and was diagnosed with left frontal lobe Complex Partial Seizures. I’ve had these for about 9 years now and have tried various medications to reduce or try and stop the seizures. I’ve tried Lamotrogine, Keppra, Clobazam, Tegretol and Zonegran. Unfortunately none have stopped the seizures. I do get very frustrated and think why won’t these seizures just stop! I feel part of my independence has gone since having to give up my driving license and having to take public transport everywhere. It’s usually tiredness and stress that bring on my seizures so I do try and control these best I can.
I love yoga which helps calm me and when I have felt I’ve needed a bit more professional help I have seen a CBT Therapist which has helped me understand my feelings flying round in my head. Most importantly my partner Simon is my rock. Supporting me through all of this, aiming to keep me positive. My mum is also always there to keep me going if I need a pick me up too. Family and friends support is so important.
Never stop fighting.
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25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.