Ann's story

When you live with uncontrolled epilepsy, despite trying all of the available anti-seizure medication and having a VNS fitted, it can feel like epilepsy is your life. However, Ann, doesn’t let her epilepsy define her and she enjoys painting, country walks and visits to the coffee shop.

Ann, now 60, was diagnosed with a brain tumour aged 16. She still experiences seizures without warning and cannot go outside without her Mum or other carers as she has experienced many falls and hurt herself badly. We spoke to Ann’s Mum and sister about  how epilepsy has affected her:

When Ann left school she attended art college. After six weeks, she had a fall at the railway station. She cycled to the doctor’s surgery the next day and he told her to walk home.  A doctor came to examine her at home, and sent her to Worcester Hospital, then she was transferred to Radcliffe Infirmary and diagnosed with a brain tumour, called astrocytoma. She was initially told that no further treatment was needed. Ann was prescribed phenytoin for several months. When it stopped working Ann began to walk in the wrong direction when she was having seizures. 

Ann had a part-time office job but when her anti-seizure medication stopped working she experienced seizures again. Although Ann was prescribed a new ASM, she lost her job as her employer couldn’t cope with her seizures. She also lost the sight in one eye following her brain tumour operation in 1982.

Sadly, no medication has made Ann free of seizures. They come without warning. She will freeze and then kick out in all directions and make loud, giggling noises. If this occurs when she is not sitting down, she can bang her head. Ann experiences at least thirty seizures or more a month. Most recently she has had several falls and ended up in hospital for observation. She had bruised her brain due to hitting her head but she is stable now. 

With her Mum and other carers, who visit twice a week Ann can still get out and about and enjoy going places and have a life outside of her home. Ann is now registered partially sighted as her eyesight has deteriorated. While Ann takes Cenobamate, which makes her very sleepy, her Mum said that she doesn’t let the seizures stop her doing what she wants. Ann still enjoys painting and gardening but must be careful when cooking or having a cup of tea in case she has a seizure and scalds herself. 

Her sister said: "The way that Ann copes with epilepsy is just amazing. So many seizures and she just gets up and carries on as if nothing has happened, eager to get on with what she can do in life. Just this year she fell and bent a metal panel in her electric heater and broke it off the wall. So sad to see, but she has such resilience."

You can read a poem written by Ann's sister, Dawn, reflecting on how epilepsy affects the whole family here.