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This article was published in June 2014. The information may be out of date. Please check our epilepsy information or our site A-Z.

Prevention - drug side-effects and stigma

30 Jun 2014

A detailed session this morning at the 11th European Congress on Epileptology (ECE) in Stockholm, Sweden, explored the idea of prevention. Particularly interesting were sections on medicine side-effects and preventing the longstanding problem of epilepsy-related stigma

Until the long-mythologised cure for epilepsy is finally found, ideas of prevention are particularly important in treating and managing epilepsy.

Prevention formed the basis of the main session this morning at Stockholm's 11th ECE, organised by the International League Against Epilepsy (ILAE).


The President of the ILAE, Emilio Perucca, gave an excellent presentation on preventing 'adverse events' - the negative side-effects of epilepsy medicines.

Mr Perucca opened by pointing out how many people with epilepsy must stop treatment with a particular medicine purely because the side-effects are intolerable.

When the epilepsy is due to a structural or metabolic cause, or where no cause can be found, one in five people with epilepsy (a fifth) are forced to stop treatment after being prescribed a medicine. The treatment must be changed as a direct result of dose-related 'adverse events'.

Mr Perucca went on to stress, however, that this need not happen in many cases. People with epilepsy do not have to cope with side-effects if treatment is approached in the right way.

He pointed out that many patients respond well to low doses of medication. This possibly implies that many side-effects may be a result of over-treatment.

Over the course of his presentation, Mr Perucca gave several examples of how clinicians may be able to avoid side-effects in their patients. Close monitoring and avoiding over-treatment are key.

It is also vital that the choice of medicine is tailored to the person with epilepsy. As an example, Mr Perucca pointed out a fairly recent advance in this area. Several years ago, it was discovered that many people of Han-Chinese decent have a particular gene.

This gene results in a very serious and often fatal side-effect of medication with carbamazepine. This side-effect affects the skin and is called Stevens-Johnson syndrome.

People with epilepsy can now be screened for this gene before being prescribed carbamazepine - avoiding the risk altogether. If we can discover more of these genetic 'markers', it may be possible to develop similar tests to avoid other side-effects.

Building up a medicine in a person's system slowly may also be very important in avoiding adverse events. Mr Perucca explored this. He presented data showing that, rather than quickly increasing a person's dose of medicine until the target dose is reached, slow increases prove less toxic. A slowly increased dose has been shown to halve the cases of negative side-effects experienced by people with epilepsy.

Interestingly, Mr Perucca also pointed out that as we grow older, we show an increased sensitivity to medicines and their unwanted side-effects. Older people can be prescribed a lower dose of medicine to avoid side-effects and still experience the same seizure control.

Given that our populations are now living longer, older people with epilepsy represent a growing patient group. This makes information like this potentially very significant.

In closing, Mr Perucca emphasised the importance of optimising the doses of epilepsy medicines to avoid over-treatment. He also warned of 'pharmacodynamic' interactions (where two drugs may make each other more effective when combined)

Where people with epilepsy are prescribed two or more drugs, care should also be taken. Prescribing two drugs with similar side-effect profiles should be avoided.


During the same session, Prof Ann Jacoby offered a presentation on the importance of preventing epilepsy-related stigma.

The stigma associated with epilepsy may have lessened in recent years. Still, Prof Jacoby drew attention to a variety of scientific papers from around the world. All clearly demonstrated that stigma still presents a problem for people living with epilepsy.

While stigma may not be seen as a priority for clinicians, or even very closely linked to medical treatment, Prof Jacoby explored stigma as being a direct result of visibility. Epilepsy is often called a 'hidden condition' because you cannot see it until a person has a seizure.

When someone does have a seizure, however, it can be frightening for people who do not understand what is happening. This in itself results in stigma. If clinicians succeed in better controlling seizures, this reduces the visibility of epilepsy - and, in turn, lessens the stigma attached to it.

Prof Jacoby went on to stress that stigma negatively impacts on a person's quality of life. In fact, several scientific studies have shown that stigma has a greater impact on a person's quality of life than their seizure control.

She also described the situation in several developing countries - a particular example being Zambia - where stigma presents a huge problem. People with epilepsy in these countries will often earn less money and experience poorer living conditions than those without. They may even be subjected to physical abuse as a direct result of their epilepsy.

In closing, Prof Jacoby described the work of an ILAE Taskforce review of the available stigma interventions. Only 12 were found. These intervention strategies seemed to have been successful in improving education about epilepsy, but had not reduced stigma.

It appears that increasing education is not enough - putting a human face to the condition is the most effective way of reducing stigma. Prof Jacoby then pointed out that real-life videos of people with epilepsy describing their experience are available on YouTube.

These videos have the most hits of any type of epilepsy video and the highest 'empathy scores'. In an increasingly digital age, it seems online tools such as YouTube may be a very effective way of doing what scientific interventions have not - putting a human face on epilepsy.

Epilepsy Today will be reporting on several session from the 11th ECE. Return daily for news reports from several sessions. You can also follow @ep_professional on twitter for live updates, or search #11thECE.

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