HAMSIA

Living with Epilepsy

Life doesn’t stop because
you have a seizure

Hamsia, 33, was diagnosed with epilepsy at the age of 17. For years she found it difficult to accept her condition, but she now wants to raise awareness and tell people ‘life doesn’t stop because you have a seizure’.

Hamsia was born in Somalia and has lived most of her life in the UK. She comes from a close-knit extended family and had a happy childhood. She enjoyed reading, storytelling, poetry, drama, the arts and theatre.

She remembers her first seizure well. It was Ramadan, she was 17 and the family were fasting. She didn’t feel quite right and complained of a sore throat and a cough. Her sister advised that she should go downstairs to make a honey and lemon drink. The last thing Hamsia remembers is opening the cupboard to take the honey out, and then nothing. The family later told her that they had heard a clattering in the kitchen. They rushed downstairs to find Hamsia experiencing what they later learned was a seizure. At the time they had no idea what was happening.

Hamsia awoke to a crowd of concerned faces, with her uncle trying to hold her and force her mouth open as it was rigid and clenched. Hamsia became distressed and shouted at her uncle, demanding that only certain people stay with her. An ambulance was called and she was taken to hospital where tests were carried out, including an MRI scan which detected abnormalities in the left frontal lobe of the brain. Up until the moment of diagnosis, Hamsia had rationalised her experience as being due to stress, exhaustion and fasting but when the formal label of ‘epilepsy’ was given, she broke down.

Hamsia’s seizures started to worsen, taking place weekly and often in the morning or evening. Following the tests at the hospital, Hamsia’s GP was informed of the results and her new diagnosis. He prescribed sodium valproate initially, but Hamsia did not respond well to the drug. It made her feel low, depressed and “just not right”. She became frustrated and experienced violent mood swings. Hamsia explained that the medication was doing her no good, but her GP was unsympathetic. She was told that the drug was ‘the best medication for epilepsy’ and when no alternative was offered, she decided to stop taking the medication.

She experienced frequent seizures throughout her university studies, which left her feeling exhausted. She couldn’t concentrate and noticed that her memory was being affected. Eventually, a new doctor prescribed her Lamotrigine, which reduced the seizures but came with side effects. Hamsia experienced mood swings, her memory worsened and she didn’t want to go out. Her seizures increased in frequency and her appetite was affected.

Hamsia moved home and was registered with another doctor. This time her concerns were listened to and the doctor, together with input from Hamsia’s neurologist, started Hamsia on a low dose of Keppra twice a day. Over time, Hamsia had become more aware of her ‘triggers’ and started to manage them better. She tries to live with more routine and balance, eats and drinks regularly and ensures she is always with someone who understands her condition. Although she was still experiencing breakthrough seizures, she began to feel more like herself again – positive, upbeat and happy. Hamsia also believes that her memory has improved, but she still needs to write important things down. At the doctor’s suggestion, her dose was increased and the breakthrough seizures are now less frequent although she still experiences episodes.

Hamsia has worked in marketing since graduating and wants to continue to develop her career. Alongside this, she wants to help combat the ignorance surrounding the condition. As Hamsia says, “life doesn’t stop because you have seizures. Talking about it is OK, and hiding it makes the situation much worse”.  She now recognises one of her biggest challenges was finally accepting her diagnosis. When she stopped fighting the ‘label’ it enabled her to be the person she is today: happy, positive, looking forward to the future and helping others. Hamsia went 11 whole months without a seizure and hopes that one day she will be entirely seizure-free.

– September 2017

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