Finding information on epilespy

Most people we interviewed said that they knew nothing or very little about epilepsy before they were diagnosed. A few said they knew something about the condition through the experiences of other family members with epilepsy or through first aid training at work.

People sought information on epilepsy from various sources. These included leaflets, books, epilepsy organisations, support groups and the internet.

While some people felt that they would have liked more information from doctors, others were satisfied with the information they had been given. Several said that they found some consultants more informative than others.

People also discussed the leaflets they had read about epilepsy, given to them by health care professionals. For some, epilepsy nurses played an important role in giving information and support. Many people had joined epilepsy organisations and recalled the valuable information and advice they had received through them. A few people became accredited volunteers for epilepsy organisations, and discussed the benefits of this.

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Several of those interviewed recalled seeking information from books. One woman, whose epilepsy was diagnosed at the age of 11, explained how she looked for information when she was a bit older. She also discussed the importance of the internet as an information resource.

The internet was a useful information tool for many people. One woman discussed the benefits of finding information on the internet, but felt that the North American websites were often more informative than the European. Another woman explained that, although she wanted more information about epilepsy, she found some of the information on the internet frightening.

One person became interested in seeking information on epilepsy when she wanted to change medications. She also recommended researching and learning about the condition. Many people were surprised to learn about the number of people with epilepsy. Several people explained that they would have liked more information about diagnostic tests for epilepsy and drug treatments. Others said they benefited from attending support groups, and that they valued information about the experiences of other people (see Sources of support for people with epilepsy).

People also discussed areas where they felt information was lacking. Some women explained that they would have liked more information on epilepsy and pregnancy (see 'Women and epilepsy'). One man said that he would have liked to learn more about non-epileptic seizures. Other people discussed the need for more information on and research into SUDEP (Sudden Unexpected Death in Epilepsy).

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Epilepsy Bereaved is an organisation dedicated to preventing death from SUDEP, raising awareness and offering support to families. For more information you can also visit our website on Young people with epilepsy.

For more information sources see our resources section.

Last reviewed May 2016.
Last updated May 2016.


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