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Wednesday, 27 January, 1999, 17:46 GMT
Thousands mislabelled epileptic
Thousands of people diagnosed with the physical disorder epilepsy are actually suffering a psychological disorder known as non-epileptic seizures.
The misdiagnosis causes anguish to the sufferers who can be put heavy medication regimes to no avail.
Even if they are correctly diagnosed, they can be accused of having fits to gain attention.
A neurologist who specialises in the treatment of epilepsy has called for doctors to get additional training on how to differentiate between the two conditions.
Epilepsy is caused by disturbances of the electrical activity in the brain, which in turn usually cause seizures. These can range from mild to severe.
When people have a seizure they may have impaired consciousness or lose consciousness.
Seizures can vary from spells of staring, changes in alertness or in behaviour, or repetitive jerking of the body.
It is a physical, rather than a psychological, condition.
Known causes of epilepsy include brain injuries, strokes or circulatory problems, tumours, infections during infancy and complications associated with premature birth.
BBC Radio 4's All in the Mind programme examines the case of Christine, who suffered uncontrollable convulsions at home alone when she was 19.
Following hospital tests she was diagnosed with epilepsy and given treatment.
Ten years on she was still suffering regular fits, which was unusual as epilepsy is controllable given the right medication.
Christine sought a further specialist opinion - the judgement was that it would be impossible for her to have epilepsy considering the amount of drugs she was taking.
She was rediagnosed as suffering non-epileptic seizures, a condition that is thought to stem from psychological factors.
Research suggests that up to 30,000 people in the UK are misdiagnosed with epilepsy.
Dr John Miller is a consultant neuropsychiatrist at the Maudsley Hospital in London who specialises in the differences between the two conditions.
He cited one study where specialists had been shown videotapes of people having a seizure.
"In only about three-quarters of the cases were the experts able to pick what was an epileptic seizure and what was a non-epileptic seizure," he said.
This indicated that the real problem was much worse, as in most cases the physician would not be able to witness the attack.
Instead they have to depend on the patient's description and those of relatives, who may well be alarmed at the time.
Dr John Duncan is a neurologist and medical director of the National Society for Epilepsy.
He said: "The key really is in the training and the use of videotape material has proven to be very useful over the years.
"Nowadays we're developing training programmes for both general physicians and specialist neurologists showing them whole ranges of videotapes showing them clips of epileptic seizures and episodes that are non-epileptic and teaching them to tell the difference between the two."
Even if they could not tell first hand, they are taught the right questions to ask to tease information out of witnesses.
He said if anti-epileptic drugs were not working in suspected cases of epilepsy, the doctor should re-evaluate.
If they were uncertain of a diagnosis, they should refer to a specialist centre, he added.
As a psychological condition, non-epileptic seizures are similar to the panic attacks suffered by people with panic disorder.
This, like epilepsy, is treatable - but only if it is correctly diagnosed.
The attacks in panic disorder are similar to the non-epileptic seizures in their build-up.
But while panic disorder patients will experience a general sense of anxiety and fear, the non-epileptic patient will hold a fear of places where it would be embarrassing to have an attack.
They then avoid these places, such as busy supermarkets.
Dr Miller is developing treatments for non-epileptic seizures at the Maudsley, along with Dr Sarah Mitchell O'Malley.
The treatment consists of helping the patient overcome their concerns, by getting patients to do the things they would normally avoid.
Patients are also advised to seek distractions when they sense an attack coming on - by reading a book, listening to music are focussing on an object.
Dr Mitchell said he was very happy with the results of his treatment so far, although a trial was only halfway complete.
The researchers hope that the development of an effective treatment for non-epileptic seizures will lead to a greater awareness of the condition and people can move on from what are useless drug treatments.
However, the NSE advises that patients should not stop taking drugs if they were in doubt. Instead, they should seek a second opinion.
All in the Mind is on BBC Radio 4 on Thursdays at 16:30 GMT
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