Hope Horncastle’s debilitating episodes might once have been dismissed as ‘hysteria’, but doctors are taking her and other young sufferers seriously.
By Eluned Price
For four years, Hope Horncastle, now 16, suffered a mystery condition that confounded her doctors. Her legs would buckle beneath her, her torso would go rigid and she would fall to the ground.
These distressing episodes, called “drop attacks” by doctors, resembled epileptic seizures – except that, unlike epilepsy, in Hope’s case there was no evidence of electrical disturbance in the brain. Despite extensive neurological and other tests, no explanation could be found.
Hope is not alone. More than 5 per cent of children and adolescents referred to Great Ormond Street Hospital’s neurological centre suffer what are officially termed medically unexplained neurological symptoms (MUNS), although the incidence is thought to be far higher in the general population. Most of these patients are girls, with an average age of 13. According to Dr Prab Prabhakar, consultant paediatric neurologist at Great Ormond Street, they tend to experience three different types of symptoms: drop attacks such as Hope’s; loss of movement, vision or hearing; or debilitating but inexplicable pain that sometimes stops them from getting out of bed.
In the past, such episodes might have been labelled as “hysteria” by doctors. Today, they are sometimes referred to as “psychogenic paralysis” or “conversion disorders” (in which a psychological crisis is converted into physical symptoms). Dr Prabhakar argues that “emotive terms” are unhelpful, and that this complex condition should not be dismissed as being “all in the mind”. A study of MUNS patients published in 2012 showed that psychological factors are indeed linked with neurological symptoms in ways that are still not completely understood.
“The symptoms are real in these cases, even though we can’t explain them, and in most cases like Hope’s, persist for at least two years,” he says. “Once we have ruled out any organic cause, we need to look at their impact on the children’s lives.” The symptoms of MUNS, he says, can lead to social isolation and depression.
Hope is the third of four daughters of Jimmy and Kala Horncastle, who live in Southend-on-Sea, Essex. She was 12 when she was first referred to Dr Prabhakar. “Her symptoms had begun the year before,” says Mrs Horncastle. “A few times, on the way to school, she’d have a brief tremor. One day, when we were out shopping, her body went rigid and her legs went floppy. It lasted for about five or 10 seconds. The GP thought it went back to her babyhood when, because she was double-jointed, she had trouble walking. Then on holiday in France that summer, the spasms suddenly increased.
The tests run by their local hospital showed no abnormality, but when Hope started secondary school the attacks lasted longer and became more frequent, sometimes occurring several times a day. Hope never lost consciousness but she was clearly at risk of injury and always needed a teacher or assistant with her.
It is not clear what factors may have been involved in the attacks, but Jimmy, 54, who is retired, says: “Hope disliked school generally. Although she enjoyed playing with her friends, she would much rather have stayed at home with her mum. When she was 12, her two elder sisters left the school – one went to college, the other to sixth form elsewhere.”
Hope adds: “If I ever had an issue at school, I’d go and find one of my sisters or the teachers would ask them to look after me. When they left school, the attacks got worse.”
So much worse, in fact, that the school decided it could not cope. Hope missed Year 8 entirely and was tutored at home. She returned in Year 9, but the school insisted that she use a wheelchair and wear a helmet to prevent injury.
Dr Prabhakar says that tests on Hope showed none of the electrical activity associated with epilepsy, and the results of heart and brain tests were all normal. The hospital recommended family therapy and art therapy. “It was good to talk about stuff,” says Hope of the family therapy, which lasted for two-and-a-half years, “but it made no difference to the attacks.”
In desperation, her parents tried osteopathy, cranial massage, tai chi and constellation therapy (which looks at family systems, as well as trauma in past generations). “As long as intervention is not harmful, we are open to alternative methods of treatment,” says Dr Prabhakar.
One such alternative treatment does seem to have helped. By November 2012, Hope was having attacks almost hourly, often lasting 15 minutes at a time. “It was the worst she had ever been,” says her mother. They began hypnotherapy sessions with Max Kirsten, a clinical hypnotherapist with a private practice in London. A month later, after four 90-minute sessions, her parents say she was almost free of her attacks, apart from the occasional momentary “flutter” on the way to school. After two further sessions last year, she has become 98 per cent free of the episodes.
In clinical hypnotherapy, the practitioner uses the unconscious to focus on a patient’s thoughts, feelings and behaviour. Kirsten has been practising clinical hypnotherapy and NLP (Neuro-Linguistic Programming, which uses language to enable a person to “recode” the way the brain responds to stimuli) for more than a decade.
“Emotional stress often causes physical reactions,” Kirsten says. “In seizure-like attacks, the symptoms are real: patients have no voluntary, conscious control over them. They are the physical expression of psychological issues.”
The key, says Kirsten, is to replace negative thoughts – which are cumulative – with positive ones. “By working with Hope’s unconscious mind and using guided imagery to supplant the negative with positive feelings, we are making her unconscious her ally.”
Hope says: “I felt very relaxed. It was really calming having Max talk to me while I stretched out in the chair.”
Dr Prabhakar agrees that some children can respond well to various different treatments, including cognitive behavioural therapy, physiotherapy or hypnotherapy. “Whichever it is, it needs to be tailored to the child.”
Hope has been well now for more than 15 months and is doing her GCSEs. She enjoys school and swimming and has started going out with friends again. “The hypnotherapy was brilliant and very, very helpful. I always looked forward to my sessions with Max – and my symptoms were reducing all the time. I feel really happy now.”
Dr Prabhakar is conducting a more systematic review of MUNS, involving other paediatric neurology centres. “Compared to other unexplained conditions, such as chronic fatigue syndrome, MUNS is under-recognised. This is a neglected group of patients,” he says. His aim is “to make the Government acknowledge that this is a serious problem significantly affecting young adolescents”.