Rachel Ferguson was struggling to cope with epilepsy, but care at a specialist centre resulted in her life changing

The family of a woman who has battled serious epilepsy for most of her life have praised the affect specialist care has had on her.

Rachel Ferguson was born with a learning disability and was first diagnosed with epilepsy at the age of two. A virus at when he she was 16 rendered her unable to sit up or swallow. Over time she recovered, but her balance was badly affected, requiring support at all times and the use of a wheelchair on some occasions.

For 10 years Rachel, who is now 33, lived independently with support, enjoying a full and active life. However, following a move to a new flat in July 2015, Rachel’s health began to deteriorate, her mobility became limited and she suffered a bad fall, resulting in her losing a tooth.

At the same time, her epilepsy was worsening, and she was administered with a new drug. After a few weeks of taking the new medication, Rachel’s eyes began turning upwards and her parents were advised she should take a further anti-epilepsy drug to counter this.

Eleanor Ferguson, Rachel’s mum, said: “Rachel was regularly seeing her GP and the learning disability team, but as she had previously turned her eyes up during epileptic activity, this was not registered as a new symptom.

“My husband and I were beside ourselves with worry. Rachel’s mobility became even more limited: she had previously been able to walk for one and a half miles with support, but could only walk a couple of yards. She now drooled and bent over when she moved, and developed a tremor in her arms which meant she had difficulty feeding herself.”

Rachel’s medical team believed that her brain didn’t have the resilience to cope with the changes in her life and her recent illnesses: they concluded her brain was effectively behaving like that of a much older person.

Eleanor added: “Rachel underwent a scan and an EEG which showed that while her eyes were rolling, she was not experiencing a seizure, and that she was aware of her surroundings while this was happening. The brain scan showed nothing to be concerned about.

“I searched for causes of eye rolling online and found that the most common reasons were headache, nausea and dizziness. As these were side effects listed on Rachel’s medication, it was decided that she should stop taking it. Her eye rolling very gradually improved, but she still had very limited mobility and continued to drool.”

The turning point in Rachel’s health followed her family requesting and being granted funding to go to The William Quarrier Scottish Epilepsy Centre in Govan, Glasgow. After an initial assessment in January 2017, Rachel was admitted to the centre for two weeks in March.

Dr Maria Oto, consultant neuropsychiatrist at the centre, said: “As epilepsy is extremely difficult to diagnose, many people who are admitted to the centre have been taking prescribed medication for many years which may not be effectively treating their seizures.

“The specialist team at the centre can support patients to reduce or even withdraw from medication in a safe environment where their seizure activity is closely monitored.”

The team at the centre decided to significantly reduce the dose of some of the drugs that Rachel was taking and introduce a new medication as well as closely monitoring her seizure activity.

Eleanor said: “The improvement in Rachel's condition was miraculous. She was now walking upright, her face was alert and animated again and the drooling and tremor in her arm had stopped. People who knew Rachel couldn’t believe the difference.

“After a further two-week stay, Rachel showed even more improvement. She has far fewer seizures and is now much more active and has built up her strength. She has more energy and is able to enjoy being out in the evenings again. She can even walk up to two-and-a-half miles with support, and enjoys swimming and trampolining. Above all, she is able to enjoy her life again.”

Those who require care for epilepsy can be referred to the epilepsy centre by a consultant, or other medical practitioners in some circumstances. More information can be found on the centre’s website.