Thousands wrongly diagnosed as epileptic
Sunday 21 March 1999
Medical staff conducting the first pilot study into the use of behavioural therapy to combat non-epileptic seizures have found that teaching patients simple techniques, such as relaxation and distraction, dramatically reduces the number of fits they have.
"There are 30,000 people who have been wrongly diagnosed as epileptic in this country," said Sara Mitchell O'Malley, a cognitive behavioural therapist who is conducting the trials at London's Maudsley Hospital.
"Although they may display all the outward symptoms of epilepsy, their seizures actually result from psychological problems related to stress, inability to cope and low self-esteem. They are taking anti-convulsant medication which doesn't prevent their seizures but which often has serious side-effects."
According to staff at the Maudsley, more than one in five patients attending epilepsy clinics do not suffer from the condition, which is caused by abnormal electrical discharges in the brain. A recent survey carried out by doctors at the David Lewis centre for epilepsy in east Cheshire indicated that as many as 100,000 people - around a quarter of those told that they are epileptic - have been wrongly diagnosed.
The problem of misdiagnosis has been attributed to the previous lack of definitive tests for the condition and the fact that many doctors base their diagnosis on a case history.
Doctors at the Maudsley's Lishman Unit for neuropsychiatry use telemetry, a form of EEG technology, to monitor the brain for between two and seven days, so that they can see what happens during seizures.
This gives more conclusive results than a simple EEG test, but it is less useful for diagnosing people whose seizures are infrequent. Around 90 per cent of the patients taking part in the pilot study were found to experience anxiety-related seizures.
"Once people know they have been misdiagnosed they tend to feel shocked and angry," said Mrs Mitchell O'Malley. "They find it very difficult to take on board because their condition has often severely restricted their lives, and they may have been unable to drive, work or even go out for years."
She admits that most patients will probably never know exactly why they began to have seizures, although the causes include high stress levels and over-exertion and, less frequently, childhood sexual abuse and trauma.
"They have built up a lot of `avoidances' of certain situations and people which are based around their fear of having another attack," she said. "The stresses they experience prior to a seizure are similar to those which cause a panic attack and can be unintentionally reinforced by family who gather round to look after them when they begin to feel strange."
Over a 12-week period she works with them to identify what happens before a seizure and show how changing their thinking and behaviour can help. The techniques are simple but effective and give patients the confidence and skills to become more in control.
They include distraction techniques, how to regulate breathing to prevent dizziness caused by hyper-ventilation, and muscular relaxation.
In addition patients are set targets for increasing activities such as going out and using public transport, with the ultimate intention of teaching the patient to be his or her own therapist.
So far the study has achieved remarkable results. Some patients who were having up to 12 seizures a day are now experiencing fewer than half that number in a year.
According to Dr Bruce Scheepers, a majority of those found to have been misdiagnosed actually suffered from underlying cardio-vascular conditions which affected the blood supply to the brain.
He says that because a large number of eligible patients refused to take part in the survey, with many unwilling to come off medication, the real proportion of those misdiagnosed could be as high as 50 per cent.
`Doctors made me take drugs I didn't need'
LEAH WAS in her mid-teens when she began having small "shivering" convulsions and was diagnosed as epileptic. She was prescribed anti-convulsants but the seizures increased in intensity and she began to black out.
"Every time I went back, the doctors upped the dosage," she said. "I don't know if the drugs made the seizures worse but they made me feel drunk and I found it difficult to focus.
"I was having up to 12 fits a day. The doctors were very insensitive and would accuse me of not taking the tablets. My body just gave up because I was being overdosed on drugs I didn't need.
"When I was a teenager a doctor told me to use birth control since it was likely that if I had a baby it would be deformed because of my medication. That just made me even more stressed."
Leah's seizures became so frequent that she eventually lost her job as a typesetter although, she says, her employers had bent over backwards to keep her on. In the end, however, she would have a seizure on the bus to work and several more during the day. Her first year of marriage passed in a haze. She hardly went out and friends and family would do her shopping for her.
Finally in 1996 she went to the Maudsley for tests and was told that she had never been epileptic. "I was upset because of how my life had been affected both by the seizures and the drugs but I was also very relieved," she said. "I stayed in hospital for three months to withdraw from drugs and I didn't have another fit for six months."
She believes the next seizure may have been triggered by the shock she felt at losing a friend in a car crash and witnessing a raid on a building society.
However she subsequently began therapy sessions with Mrs Mitchell O'Malley and has had only one or two seizures since Christmas, compared with between eight and 12 a day during the same period last year.
The treatment involved talking about how Leah could deal with stress as well as rebuilding her confidence. She now practises nightly relaxation exercises and distraction techniques, for example describing an object to herself when she begins to feel "funny".
"After thinking I had epilepsy for so many years, I had lost a lot of confidence but I am feeling much more in control," she said.
t For information about the treatment, write to Dan Charlton, Maudsley Hospital, Denmark Hill, London SE5 8AZ.
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