I thought I was a peanut

Doctors thought Caroline Reynolds had a migraine until she began suffering from bizarre delusions and a potentially fatal brain disease was diagnosed.Caroline tells JANE GREGORY about her experience JANE GREGORY

SIX MONTHS ago, Caroline Reynolds thought she was a peanut. She also believed that a band of gorillas was out to get her and that she was living in 1978.

The hallucinations were symptoms of encephalitis (inflammation of the brain), a condition similar to meningitis which can result in permanent brain damage or death. The first signs of her illness appeared at the end of March when, after a mild bout of 'flu, she began vomiting and suffering from diarrhoea. She was also troubled by agonising headaches, "zigzaggy vision" and numbness down her left side . Doctors at her local practice in Hemel Hempstead, Lincoln House surgery, thought she had a migraine. However, she was in so much pain that her partner, Kevin Kelly, 30, took her to the accident and emergency department at the local hospital, where she was given a painkilling injection and tests, before being told to go home. On 10 April, she started thrashing about during the night. "I thought Kevin was a snake," says 32-year-old Caroline. "I screamed at him and became uncontrollable." She had two more disrupted nights and went to see her GP again on 14 April. She had lost a stone, could barely walk and was drowsy. She was immediately referred to hospital, where she was given a CT scan and put on a drip. She was extremely confused and when doctors asked what year it was, she said 1978. She began suffering from paranoid fantasies. "I thought I was in a prison camp, and the nurses were my captors," she says. Caroline was given a lumbar puncture, which showed high cerebral pressure, and was transferred to the Royal Free Hospital, in Hampstead, where she began experiencing hallucinations, including gorillas which seemed to materialise from doors. "I'd shout: 'Go away, I'm not scared of you!' Then they'd fade back into the door again." At one point, she thought she was a peanut. "My eight-year- old son, Luke, laughs about that now". At the Royal Free, Caroline was put on an antibiotic drip and moved into isolation. When Kevin returned the next day, a nurse told him Caroline had been close to death the previous night. Caroline had blood tests, an MRI scan and an EEG. A tropical disease expert was consulted. However, the medical staff were still not able to establish what was wrong and did not feel she was fit enough to go home. Against their advice, she discharged herself on 25 April. Two days later, her speech became slurred, one side of her mouth dropped and she was unable to move because of vicious spasms in her back. She returned to Hemel Hempstead Hospital, where she spent the next four days recovering. She was then told she was suffering from viral encephalitis. The acute illness is usually followed by a fairly rapid return to normal but recovery is often incomplete. Possible side-effects include memory loss, poor concentration and personality changes. The illness has left her tired, irritable and, at times, she struggles for words. Some nights, instead of sleeping, she compulsively relives her illness. "I have to go through everything that happened before I can go to sleep," she says. "I feel so angry that I spent three weeks trying to convince people it wasn't just a headache. Although I had several doctor's appointments and an afternoon in A and E, they still didn't find out what was wrong. Everyone thought I was making a fuss over nothing, but I nearly died." A SPOKESPERSON for Hemel Hempstead Hospital said: "Encephalitis is extremely difficult to diagnose, especially when someone comes in complaining of these kinds of symptoms, which have many potential causes. We would be more than happy to take up any complaints and investigate, if Miss Reynolds would write to us." A spokeswoman for the Lincoln House Surgery said: "It's a very difficult diagnosis to make. You might think that you could spot something as serious as encephalitis straight away but it's not that easy. Very often, a diagnosis is made at the end of treatment, which is what happened in this case. Also, it's a presumed diagnosis, never confirmed, on the basis that every other test was negative. We can't say for definite that's what she had but her case was clinically under review at the Royal Free and has been followed up by a neurologist. "It didn't help that she was seen on a number of occasions by different doctors. It's easy to say with hindsight that she had more than severe headaches but, by and large, I think she has had good service." ENCEPHALITIS ... THE FACTS l The most common known cause of encephalitis is the herpes simplex virus, also responsible for cold sores. However, in the majority of cases the cause is unknown. lEncephalitis may occur during or after a number of viral infections. It can strike up to 14 days after contracting illnesses, including measles, mumps, flu and glandular fever. lThe original infection can be a flu-like illness or stomach upset, followed by altered consciousness (excessive sleepiness, disorientation and bizarre behaviour) as a result of the direct involvement of the brain. lIn severe cases, seizures and coma may follow. lEncephalitis affects less than one per cent of the population and can occur at any age. lThe mortality rate is between 10 and 20 per cent. lThe earlier it is diagnosed, the better the outcome. lScans will show if the brain is inflamed and a lumbar puncture (where fluid surrounding the brain and spinal cord is sampled) can help to confirm the diagnosis. lDrugs can help combat the herpes simplex virus, if caught in the early stages. If the patient starts to have a fit, anti-convulsants may be given. Otherwise, the patient has to fight the infection with their own resources. Encephalitis Awareness Week runs until Sunday. For more information contact the Encephalitis Support Group on 01751 433318.

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