QUESTIONS ABOUT EPILEPSY
Posted: under Epilepsy.
Tags: Epilepsy
1. Does having a single (isolated) fit mean that someone has epilepsy? No. By definition, epilepsy means having recurrent seizures, so a single fit does not mean that that person has epilepsy. About 60% of people with an isolated fit never have another one. On the other hand, for someone who is destined to develop epilepsy, the first fit will be followed by others in due course.
2. I find the words ‘fits’, ‘convulsions’ and ‘seizures’ confusing as they are used interchangeably. Are they all the same? Yes, they all have the same meaning. ‘Seizures’ is the preferred term, but both the others are quite acceptable. Other expressions which are vague and confusing such as ‘turns’ or ‘funny spells’ are of no value.
3. Our four-year-old son has had two convulsions associated with tonsillitis and fever. Does he have epilepsy? Almost surely not. He has almost certainly had two febrile convulsions which very rarely lead to epilepsy. Febrile convulsions are common, occurring in about 4% of children under the age of five years. These convulsions are due to fever, usually associated with a sore throat, tonsillitis or an ear infection. It is quite uncommon that febrile convulsions require treatment with anticonvulsant medication, but it is of value to try and prevent recurrent episodes by cooling the child down when he or she has a fever and giving medication to bring the fever down (paracetamol).
4. A friend of mine with epilepsy talks about the warning that he gets before a fit. My son has epilepsy but he does not seem to get any warning at all. What does this mean? Some people with epilepsy may get a warning, which is called an aura, at the beginning of a fit. This usually affects people with partial (involving part of the brain only) epilepsy before they then develop a generalised fit. The nature of the aura will vary from person to person and will depend on that part of the brain involved. An aura should not be confused with prodromal symptoms which some people may have for hours or even days before having a fit. These symptoms include irritability, headache, feeling ‘generally unwell’, tummy aches and so on.
5. Did my child’s birth lead to his epilepsy? During birth, the child’s head is subjected to quite strong pressures from the outside, so that small areas of bleeding may occur on the surface of the brain. It is also possible for the same thing to occur inside the brain. Occasionally there may be problems at birth so that the child is born very rapidly or with great difficulty and the stresses on the baby’s head and brain are therefore greater than usual. This is called cerebral (brain) birth trauma (injury).
Naturally it is difficult to be certain that events which occurred at birth are related to the development of epilepsy which may occur some years later. However, in some instances there is a strong suspicion that this may be the case.
It is often confusing for parents to be told that their child’s fits are due to something which occurred at birth, as they would have expected the fits to have started at the time of the injury. This is often not the case and the seizures may only begin in childhood or even later in life.
6. Can seizures occur in newborn babies? Seizures in the
neonatal period (the first month of life) are not uncommon, with
most fits occurring on the first and second days of life. Neonatal
fits have not been discussed in this book as they may not lead
to epilepsy and many of the causes of neonatal fits can be
defined and treated. Causes include difficulties during labour or delivery, abnormalities of the brain, bleeding into the brain, meningitis, hypoxia (a lack of oxygen to the brain), hypoglycaemia (low blood sugar) or a low blood calcium or magnesium. As already mentioned, neonatal seizures in themselves do not necessarily predispose to epilepsy but, if there is associated brain damage, epilepsy may develop in later childhood.
7. Do fits have any effect on memory? It is quite common for people with epilepsy to complain of a poor memory. This seems to be most common in persons with temporal lobe epilepsy, but very frequent seizures, long fits and heavy anticonvulsant therapy may also contribute. There is not a great deal that can be done about this sort of memory loss other than to try and get better seizure control if that is possible.
8. How do anticonvulsant drugs work? Despite the existence of these drugs for many years, the answer to this question is uncertain. In general terms, it seems that anticonvulsant drugs increase the seizure threshold (the resistance of the brain to seizures) and this is probably why they are effective. They seem to prevent, or limit, the production of abnormal electrical activity by the brain.
9. Do fits themselves damage the brain? This of course is difficult to answer accurately as it is not possible to do controlled studies in humans to get the answer. It is probably only prolonged grand mal seizures, including prolonged febrile convulsions, which may be harmful. Again it is difficult to say how long a fit has to be before it becomes dangerous. Most doctors would suggest 15-30 minutes. The damage does not occur from the fit itself, but from the lack of oxygen to the brain during the fit. Probably the most commonly damaged part of the brain, especially in children, is the temporal lobe. Most seizures do not seem to do any harm to the brain.
10. Is it possible to do something which will prevent a fit when you can feel it coming on? If you are lucky enough to be able to develop some way of preventing some of your fits you are indeed fortunate. It is very uncommon that this can be done, but very occasionally some sort of self-control measure may be helpful and will either abort or delay the fit. Self-hypnosis may be useful in the very few people who have an aura of such length that they can hypnotise themselves. Overall there is little that can be done to prevent fits in this way.
11. Can epilepsy be caused by stress? The answer to this common question is that epilepsy is probably never caused by stress or a shock. However, stress may make fits worse, or more frequent, in someone with established epilepsy.
12. Can excitement bring on fits? This is certainly possible and it is known that some people may have more fits when they are excited.
13. Is it possible for someone to bring on fits? Yes, it certainly is. There are two common situations in which people induce fits. Firstly, some people may use a known provoking factor such as overbreathing, flickering light and so on, to bring on a fit at a time that suits them. These are real fits. The second group are those who have false fits (pseudoseizures). These fits have many of the outward appearances of being real, but if the EEG is examined during the so-called fit, it is normal. It may be very difficult to diagnose pseudoseizures, as they often occur in people with epilepsy. As a generalisation, most people with epilepsy, once on regular medication, will have an improvement in seizure control or at least will remain static. It is unusual to see a deterioration. The hallmark of pseudoseizures is deteriorating seizure control despite more and more medication. The diagnosis is best made by video-telemetry so that the fit can be seen and an EEG recorded simultaneously. There is almost always an underlying psychological problem to account for pseudoseizures. In essence, patients are using their existing epilepsy to have more fits so that they can achieve a particular purpose, for instance get out of a difficult situation, although they may be doing it subconsciously. Pseudoseizures are not all that common, but present a diagnostic and treatment problem.
14. My 20-year-old son has just been diagnosed as having epilepsy. He enjoys the occasional beer – is that okay?
Alcohol in moderation is unlikely to have any deleterious effect on epilepsy. However, it is important that people with epilepsy realise what alcohol may do:
It may affect the working of the liver in such a way that anticonvulsant drugs, which are broken down in the body by the liver, may be broken down more rapidly. This may make the drugs less effective.
As we all know, alcohol slows one down. So do the barbiturates and the benzodiazepines (Valium-related drugs such as clonazepam, nitrazepam and clobazam), so it is a good idea to avoid these combinations.
Heavy drinking may provoke seizures, especially during the hangover period the next morning.
15. Does climate have any effect on epilepsy? There is no relationship between climate and epilepsy. There is no scientific evidence that a hot climate is hazardous, although some epileptics feel that their fits are worse in extreme heat.
16. How does a doctor know what dosage of an anticonvulsant to use? The dosage has been learnt from experience over the years. In general, young children tend to use up anticonvulsants more rapidly in their body than do adults. For that reason they need larger amounts of anticonvulsant relative to their body weight than adults do. In children, dosage is usually worked out from the child’s weight and may need to be increased as the child grows. Blood level monitoring may also be useful to guide the doctor in finding the right dosage for an individual patient.
17. I have grand mal seizures which are well controlled. I am a trained secretary who is about to do a word processor course. Is there a risk of having fits from working in front of an electronic screen? You are referring to photosensitive epilepsy. As has already been discussed earlier in this book, some people may have a photosensitive tendency. Their fits may be provoked by various light sources including television, flickering lights and so on. There is no evidence that video display units (VDUs) present a photosensitive problem.
18. I have heard it said that people with epilepsy have an ‘epileptic personality’. Is this true? No. This is based on old observations of people with severe epilepsy who used to live in institutions. Epileptics may have some psychological problems -these may be seen in people with epilepsy and brain damage, in some patients with temporal lobe epilepsy and in those who have had multiple setbacks as a result of their epilepsy. Not surprisingly, if someone has been knocked back for job after job, they are likely to become gloomy and withdrawn. This is not a direct association with their epilepsy. In some people, anticonvulsants, especially barbiturates and benzodiazepines, may cause irritability and drowsiness. But the idea of an epileptic personality should no longer be discussed.
19. Phenytoin may produce unsightly gum swelling. Can this be avoided? Gum swelling probably cannot be avoided completely, but it can be minimised by good oral hygiene. Regular dental supervision and brushing of the teeth associated with the use of dental floss goes a long way to keeping this side effect under control. When treatment with phenytoin is stopped, the gum swelling usually settles down over the next year.
20. How often should someone with epilepsy consult their doctor? This is very much a matter of commonsense. If the patient has mild epilepsy and infrequent seizures, then a checkup every six or twelve months may well be sufficient. On the other hand, if seizure control is inadequate or if the patient is taking a drug like phenytoin which, as we discussed before, is handled with difficulty in the body, then it may be necessary to see your doctor more frequently.
21. Every time I visit my doctor for a check-up or for a prescription, I have a blood level test done. My fits are well controlled and I wonder if this is necessary? No, it is not necessary. It is only necessary to check blood levels if there is a problem that will be helped by knowing the level. Obviously, when the fits are poorly controlled, when starting someone on phenytoin or for some other specific reason, there is value in knowing the blood level. Measuring blood levels should not be a substitute for the much more important matter of the doctor discussing your epilepsy with you. Even if the fits are well controlled, an encouraging chat is usually appreciated by the patient.
22. Why is it necessary to take anticonvulsant medication regularly? To obtain adequate seizure control, anticonvulsants need to be taken regularly to ensure a constant blood level of the drug. This in turn provides a constant brain level of the drug, which helps to control the fits. Taking medication sporadically will not allow this to occur.
23. Do anticonvulsants have any long-term effects? The answer to this is difficult as it is necessary to follow up patients for a long time to obtain this information. In addition, it is hard to separate the possible effects of frequent, severe seizures from the effects of medication. It is felt that the long-term use of barbiturates, and possibly phenytoin, for more than 15 to 20 years may be associated with some intellectual dulling.
24. Do anticonvulsants affect behaviour? Phenobarbitone and primidone can cause overactivity in a proportion of children; probably 20-40% of children may be affected. This does not appear to be the case with the other anticonvulsants.
25. Can epilepsy be cured? Epilepsy cannot be ‘cured’ in the usual sense of the term. However, it can be controlled by medication. For a few people a cure may be achieved surgically. On the other hand, for many people, especially children, the seizures will cease and they will be able to come off their medication .
26. I have recently been doing a lot of physical training for a canoe marathon and have had several fits. Before starting training, I had not had a fit for at least six months. Is there a reason for this? Amongst many other effects on the body, really vigorous physical training tends to make the liver metabolise (break down) anticonvulsants more rapidly, thus lowering the blood level. This has been noted with phenytoin and may apply to other drugs. It is worth getting your blood level checked from time to time during your training and perhaps increasing the anticonvulsant dosage if necessary. You will need to remember that when you stop training and lapse back to a more sedentary life, the situation will return to its previous state and it may be necessary to lower the dose to its previous level.
*19\192\2*
Epilepsy
