helpline 01494 601 400

kathleen's story

Kathleen BrownKathleen Brown was first diagnosed with idiopathic epilepsy at the age of 12. She reflects on the treatment she's received, working out that she's been prescribed at least 10 different drugs over the years.

Kathleen's story starts as a little girl. She recalls being out playing and getting a "tingling" in her fingers and thinks she had absence seizures - not being aware of what was going on around her but being told by classmates after school that teachers chastised her for being inattentive.

First seizure

Her diagnosis came after her first "fit" which happened after she sat her 11+ exam.  She and her Mum were sent to the local hospital which she described as a horrible experience - "no-one told me what was happening. I was scared stiff. I saw all sorts of people coming and going while I was waiting. Then they put these funny electrodes on my head". The diagnosis of epilepsy was delivered by a consultant who told her she would have to have medication for the rest of her life.

Her first medication was phenobarbital which Kathleen took, remaining seizure free for a while, making it through school and passing her exams.

Working as an office junior

When she began work as an office junior, she didn't tell her employers of her condition feeling that there was a stigma attached to it. But one day she had a seizure while in the office. She found herself explaining why she hadn't told them but then found they were supportive, once they knew, and Kathleen worked there for two years, leaving only to get married.

As a young newly-wed, there were new issues to consider. Before having children, her consultant advised cutting down on her medication. She did so and went on to have two children, a girl and a boy, sailing through her pregnancies with no problems.

Life struggles

Sadly, Kathleen's marriage broke down and as a single parent faced new challenges. With support from her family she enrolled at catering college. From a small-scale start of making cakes and selling them to local restaurants she opened her own business, having a successful delicatessen in Stokesley, Yorkshire. The shop did so well that a move to bigger premises was called for, along with an increase in staff to 8 people. But after 18 years of successfully running the business Kathleen's seizures returned and the business closed in 2001.

For the next 10 years or so Kathleen faced many struggles in her life, no longer able to drive, looking for work, managing to pay the mortgage and getting her seizures under control. This made her feel very low at times and that everything was against her.

changes in the support and medication

During this time her children both went to university and she is very proud of them. Her daughter lives in Australia now and Kathleen makes frequent trips to see her, two of these visits on her own.

In 2015, her condition was managed with a combination of three medications - levetiracetam, valproate and lamotrigine - and she is seizure-free, though the side effects are a problem, especially with her memory.

Kathleen also reflected on changes in the support available, noting that there were no epilepsy specialist nurses when she was younger. Kathleen's first encounter with a specialist nurse was very positive - she says that they are great listeners and can be hugely helpful in supporting your relationship with your consultant.

She went on to sum up her attitude to epilepsy: to lead a full and positive life and that living with epilepsy has never held her back.