Julie was diagnosed with epilepsy aged 19 after having a seizure one day at work. She has tried a lot of different medications and currently takes four medicines. But her seizures are still uncontrolled despite being on this combination of medication for a number of years.
Julie has different types of seizures, including absences, and has been told that they happen in the part of her brain that controls language. When she has seizures they can cause her to freeze or talk ‘double-Dutch’. After her seizures she can become upset or angry. She can have up to around eight or nine seizures a day.
Recently Julie saw a new neurologist who asked if she had ever considered brain surgery. He also explained that her epilepsy could have been caused by scarring on her brain resulting from febrile seizures she had as a child. Nobody has ever mentioned this before. He referred her for video telemetry, a test which involves wearing an ambulatory EEG and recording movements by video camera. Julie spent a week in hospital, with reduced medicines, so her seizure activity could be observed. The results showed scarring, mainly on the left of her brain with the seizures starting in the right-side of the brain.
Julie is now on the waiting list for more video telemetry and will need to be admitted again to Leeds General Infirmary for these. She could be waiting up to six months for the tests and may need further ones in London depending on the outcome. Julie’s epilepsy is managed by her neurologist, not her GP. She does have access to an epilepsy specialist nurse but does not have regular appointments.
Julie has two children but lost a daughter, Emma, 19 years ago. Emma had spina bifida and hydrachephalus, which were found at the 20-week scan. Julie and her husband decided to have a termination. The hospital told Julie that the problems could have been caused by the sodium valproate that she was taking to control her epilepsy at the time of her pregnancy. Julie how has two children.
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