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‘I  had my first fit at the age of 12. I was on board ship at the time with the Girl Guides. Since it was my first trip abroad, and there was a force eight gale raging in the North Sea, no one thought that it was anything more than a childish convulsion. No one told me about it either. I had this incredible dream of lying in a cabin wearing a friend’s blazer. No one said, ‘That’s not a dream, that happened to you yesterday.’ Why there was all this secrecy I never knew.

‘I returned home from my trip abroad, and proceeded to relate all to my parents. “You haven’t told me everything, “said my mother. ” You didn’t tell me you were ill while you were away.” No one was more astonished than me. Despite my protests I was led off to see the doctor, who gave me tablets to take, told me never to forget them, and said no more.

‘A year later I went off to camp with the Guides again. I remember being sent to the farmhouse to collect eggs and bread, with another girl to help carry. “Thank goodness Sarah had the eggs,” was the comment of the day, since I had a fit just outside the farmhouse door. My mother was sent for and suggestions were made that perhaps it was being away from home that “upset” me. To her everlasting credit my mother asked me what I felt about the whole matter, and I was allowed to stay at the camp. It was bad enough being the “different” girl who had the fit: I didn’t want to be the “different girl who went home” too.

‘I had my third a few months after that and went to see a specialist at a London hospital. “Epilepsy,” he confirmed after tests had been done. It was almost a relief to know that I had a recognizable condition, and was not just having “funny turns” every so often . . .’

(From Epilepsy ’78, British Epilepsy Association – see appendix)

Plenty of people will recognize and empathize with this feeling of relief when a vague feeling of being under the weather or a series of odd or inexplicable symptoms turns out to have a solid basis in medical fact. Whatever the diagnosis, once you know what is wrong you can start to face it and deal with it.

However, a diagnosis of epilepsy is not one to be made lightly. Once it is made, the person concerned is given a ‘label’ that may affect their chances of employment or lose them various privileges – a driving licence for example. It means, too, that they will have to start a regime of drug-taking that may continue for months or even years.

Another problem is that epilepsy is not a simple disease and it is not always easy to diagnose. There is no such thing as a ‘typical’ case of epilepsy. It can take many forms and have many different symptoms; there is no one simple test for it. This is one reason (among several) why people who have epilepsy dislike being lumped together and referred to as ‘epileptics’. It is a meaningless label as well as an insulting one.

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Epilepsy

Women with epilepsy are quite often concerned about getting pregnant. There appear to be five reasons for this concern. They wish to know:

if they are likely to hand their epilepsy on to their children;

whether their fits will get worse during pregnancy;

whether it is safe for the baby that the mother should take anticonvulsants drugs during pregnancy;

if there will be any problems in the newborn baby from these drugs;

if they can safely breast feed the baby.

With regard to handing on epilepsy to one’s children – as mentioned earlier, if one parent has epilepsy, the chances of one of the children having epilepsy are no greater than in the population at large. If both parents have epilepsy, it would appear that the risk of a child having epilepsy is about 10 per cent. So in fact the chance of a child inheriting epilepsy, particularly idiopathic epilepsy, is negligible.

As far as seizures during pregnancy are concerned, the situation is not as clear as it might be. There is evidence that for some women, seizure control may deteriorate, while for others there may in fact be no change or even an improvement. A patient told me recently that “she would like to remain pregnant forever” as she had not had a single fit during her pregnancy, compared with six fits in the preceding nine months!

As a general working rule, it is suggested that people who have more than one grand mal fit a month are those who are most likely to have a deterioration in seizure control during pregnancy. The deterioration, if it occurs, is most likely during the first three months of pregnancy. There are a number of theories why this may happen, but none has been proved. It may be of value to check the blood anticonvulsant levels during pregnancy, especially if there is a deterioration in seizure control. The blood levels may fall, necessitating an increase in dosage during the pregnancy.

The main concern for parents is whether the anticonvulsants can harm the unborn baby (foetus). It is known by most people with epilepsy that this is a potential hazard. The effects include physical abnormalities in the baby, a process known as teratogenesis. Abnormalities have been reported in the offspring of mothers on all the commonly used anticonvulsants with the exception of carbamazepine. This is particularly applicable to phenytoin, barbiturates and sodium valproate. Babies born to mothers who have been on carbamazepine have not been shown to have any physical abnormalities, but have a smaller head size than other babies. This has not been shown to be any handicap to the babies who have been followed up for five years.

The risk of abnormalities in the baby is difficult to assess, but it seems to be most common in mothers on polytherapy (receiving numerous drugs), especially if they are on three or more anticonvulsants. The risk in mothers on phenytoin, with or without other medications, appears to be about a 10% chance of the baby showing features of the ‘foetal hydantoin’ syndrome. This syndrome consists of cleft palate, abnormalities of the fingers, possible heart abnormalities and mild mental retardation. Thus, at present, if it is possible, it would seem wise to try to change patients over to carbamazepine before conception. This may not be possible in all patients and, of course, many women will first visit their doctor when already pregnant, at which time there is no purpose in making the change.

Anticonvulsants taken by the mother during pregnancy may have some effects on the baby immediately after birth, as they are transmitted to the baby across the placenta. These include the possibility of a mild bleeding tendency and some drowsiness. In mothers who have been taking barbiturates, the infant may occasionally show features of a withdrawal reaction with irritability, jitteriness and poor sucking. None of these features is either common or serious.

As far as breast feeding is concerned, all the anticonvulsant drugs appear in breast milk to some extent. At worst they may produce some mild drowsiness in the baby. There is no reason for mothers with epilepsy not to breast feed if they wish to do so. If the mother is concerned that she might have a fit and drop the baby, she should breast feed sitting on the floor.

In summary

It is predominantly patients with grand mal seizures more than once a month, who require particular attention during pregnancy.

The teratogenic effect of anticonvulsants is small. The risks of stopping treatment, especially the possibility of status epilepticus, are probably greater than the risks of having an abnormal baby.

Any abnormality probably occurs before the woman even knows that she is pregnant. So stopping the drug when pregnancy is discovered is of no help and may provoke fits.

At the time of writing, carbamazepine would appear to be the safest anticonvulsant in pregnancy.

It is appropriate to continue anticonvulsant treatment throughout pregnancy with the assistance of blood level monitoring where this is seen as necessary.

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Epilepsy