Q:Despite the fact that doctors have got me diagnosed as epileptic, I know I am not and that the underlying cause of my seizures is anti-convulsants. When I put together certain factors to test myself, I realized that I may have been trapped in a vic

A:Thank you for your letter and the highly informative articles you sent, which we’ll elaborate for the benefit of our readers. In one, experts at Birmingham Children’s Hospital concluded that about half of cases of so called juvenile epilepsy are wrongly diagnosed (The Observer, December 1992). This is significant, as more than half the 340,000 epilepsies in Britain are believed to begin in childhood.

Dr Michael Prendergast, consultant child psychiatrist at the Children’s Hospital, examined 311 children referred to the hospital for suspected or diagnosed epilepsy and discovered that 138, or 44 per cent, of the children didn’t have it.

His results are nearly identical to those of a Scottish study completed in 1896 by the Royal Hospital for Sick Children in Glasgow. In that study, Dr John Stephenson, the hospital’s consultant pediatric neurologist, found that 47 per cent of the children referred there didn’t in fact have epilepsy.

Also for the benefit of our readers, please allow me to recount your story. Jacqui, now 36, was diagnosed as having epilepsy when she was 11, after suffering several blackouts. She was immediately placed on anti-convulsants, although the first convulsion didn’t appear until after she’d been on the drugs. She has spent years battling the myriad of drug side effects, including blackouts and convulsions. From 1988, when she began reducing the dosage of the drugs she was taking, the seizures have correspondingly reduced, from 200 to several dozen.

Although doctors these days claim to be more cautious about automatically handing out anti-convulsant drugs to children with mild blackouts and seizures, the conventional wisdom among most doctors still is that, until suppressed by drug treatment, seizures will recur, and that drug treatment can affect the course of the disease, reducing the risk of early epilepsy turning into an intractible disorder.

This viewpoint does have some preliminary evidence, according to a review paper by E H Reynolds, consultant neurologist at the Centre of Epilepsy in Maudsley Hospital in London. Reynolds quoted several studies showing that the more seizures, the worse the prognosis (Epilepsia, 1989; 30: 648), and that patients with single seizures did better at least over the medium term when they got drugs, compared to those who’d been given placebo or had treatment delayed (Clin Neurol Neurosurg 1992; 94 (suppl): S61-3); Neurology, 1993; 432: 478-83).

Nevertheless, in that same issue of the British Medical Journal (January 21, 1994) David Chadwick, professor of neurology at Walton Centre for Neurology and Neurosurgery in Liverpool, presents a strong counterargument for holding off early treatment. For one thing, he argues, epilepsy is an umbrella term referring to a group of disorders, and not a single, homogeneous disease. In some cases of epilepsy, such as “benign rolandic epilepsy” in children, where seizures only affecting the face, throat and arm occur during sleep, there is strong evidence that the seizures stop by themselves by mid adolescence. Furthermore, the preliminary data suggesting that people are better off getting drugs after early treatment is far from “definitive”.

Among the very few longer term studies examining which factors predicted at least a five year seizure free remission, one found that developing epilepsy before age 16, having no evidence of brain damages, tonic-clonic (grand mal) seizures or spike wave abnormalities on an electroencephalogram (EEC) in other words, your very situation were all factors that tended to favour remission, whether or not drugs were given (Epilepsia, 1988; 29: 590-600). It should be noted that the situation is very different with other forms of epilepsy, such as juvenile myoclonic epilepsy, he says, where patients who’ve had grand mal seizures have a high probability of relapse if the drugs are withdrawn.

As Chadwick emphasizes, it’s very difficult to know whether drugs given early make any difference because untreated epileptics are difficult to find. But those studies that are performed suggest that drugs make virtually no difference. In one small study of 33 untreated patients, after 20 years half the group (52 per cent) had gone into “remission” a percentage which is equivalent to those given drugs (British Medical Journal, 1993; 307: 483). Similar remission rates occurred in a group of 302 patients in Africa and 192 patients in Ecuador; where treatment was delayed, six month remission rates were the equivalent of populations given early drug treatment (The Lancet, 1991; 337: 406-9; Epilepsy Res; 1993; 14: 237-44).

Scientific trials (ie, randomized clinical trials) about early treatment support your views that patients taking drugs may be actually worse off. In one study, which gave patients with seizures after head injury either the epilepsy drug phenytoin or a placebo, the patients taking the drugs had more seizures than the control group (New Eng J Med, 1990; 323: 497-502). In a recent Italian multicentre study, 400 patients were randomly assigned to treatment or a placebo. Although the treatment group had half the risk of having a further seizure, thus far there is no evidence of any difference between the two groups in terms of time taken for remission (Neurology, 1993; 43: 478-83).

In other words, doctors don’t have enough information to encourage early treatment with certainty.

As you undoubtedly know, all epileptic drug treatment carries a host of potentially lethal effects.

The latest study (J Neurol Neurosurg Psychiatry, 1995; 58: 44-50) shows side effects were so serious that nearly a quarter of patients on phenobarbitone, and 11 per cent of those on carbamazepine, had to be taken off the drugs. As the apparent safest of the four, the study concluded that phenytoin was the first drug of choice.

One highly overlooked treatment not involving drugs concerns the little known connection between epilepsy and celiac disease, or an intolerance of gluten containing grains wheat, oats, barley and rye. Although numerous studies have produced this association, the largest study to date of patients with epilepsy found that 77 per cent passed the test for celiac disease (The Lancet, 1992; 340: 439-43). A biopsy of the small bowel found the characteristic atrophy of the villi, or tiny hairs of the gut.

Furthermore, although the patients had been diagnosed with epilepsy before the connection with celiac disease had been diagnosed, most demonstrated symptoms of malabsorption. Seizures stopped or were halved in frequency in a third of patients after they embarked on a gluten free diet. Those who were most successful were younger and had epilepsy for a shorter amount of time, suggesting that the one way that early diagnosis may improve matters is making the celiac connection.

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