Epilepsy - messages to others

Many people we interviewed gave messages of support and advice to people who were newly diagnosed with epilepsy. They often advised staying calm and not being afraid. Some also recommended asking questions and getting explanations from doctors, getting referred to a neurologist, and accepting support from others.

Some people who'd had surgery for epilepsy recommended finding out whether this was an option. Many advised taking medications as prescribed. One man emphasised the importance of discussing the social and emotional impacts of epilepsy, and the need for more neurologists specialising in the condition.

People also advised seeking information about epilepsy and learning more about the condition. Joining epilepsy organisations was another strong recommendation. Many people stressed the importance of being open about having epilepsy and discussing it with others. Some also advised carers and family members to be patient and supportive as accepting support can be difficult when someone does not completely understand how they feel. One man recommended accepting support and help, and that carers need to be reassuring and understanding.

Some people we interviewed urged others with epilepsy not to be ashamed of having the condition but to be proud and open. Some recommended joining support groups where they could talk to others with experience of the condition. Yet others recommended carrying identification cards for safety. One woman also advised being aware of triggers to seizures.

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Several people discussed the importance of not letting their epilepsy become restricting. One man explained that, while he'd had to make some changes because of his epilepsy, it was important to remain focused and pursue different interests. Another stressed the importance of being positive. He also explained how he kept his epilepsy in perspective, and how this had inspired him to run in the London Marathon.

Some of the carers of people with epilepsy, pointed out the benefits of talking to other carers. One woman also advised carers to accept help when needed and to be aware of over-protecting children.

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Last reviewed May 2016.
Last updated March 2014.



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