How can I manage my epilepsy?

Health panel: She's had epilepsy for eight years and has frequent seizures, despite taking drugs which leave her exhausted and worried about her fertility. Are there any safer, more effective treatments?
  
  


Question

I am a 28-year-old woman and have had epilepsy for about eight years. Despite taking a combination of three drugs, I continue to have frequent generalised seizures, sometimes in clusters of two or three over a few days. My neurologist doesn't seem to be able to offer me anything other than more medication. I am already exhausted all the time and find that as my medication increases, my cognitive skills are deteriorating. I'm also worried about the effect that taking large doses of medication may have on my ability to have children in the near(ish) future. I don't drink alcohol and I avoid caffeine. Thank you for any help you can offer.

The neurologist
Ley Sander

It's unusual to be on three different epilepsy drugs, particularly if they aren't working, so I suggest you review your treatment with your neurologist. Not all neurologists specialise in epilepsy, so you need to be referred to someone who does. The type of epilepsy you suffer from will determine your treatment, so ask for a definitive diagnosis. You talk of 'generalised' seizures, but there is a possibility that your epilepsy is actually 'partial' - and a small number of people with this can be cured by surgery. You are trying to help yourself by avoiding alcohol and coffee, which is great, though there's no clear evidence that either sets off epilepsy.

I understand your concerns over fertility. Some anti-epileptic drugs can damage an unborn baby, and that risk is worse if you take a combination. That's another reason to be reassessed - if your seizures can be controlled with one drug, it vastly improves your chances of a successful pregnancy.

· Ley Sander is a consultant neurologist at the National Hospital for Neurology and Neurosurgery

The fellow sufferer

Catherine Wilson

I started having epileptic seizures at 15. I'm now 28, and I'm finally getting them under control. I had a seizure recently, but until then I'd been seizure-free for 20 months, which was a major breakthrough. As the drugs aren't working, I'd talk to your neurologist about your options, especially as there are new drugs that may be safer for women who want to get pregnant. Your drugs could also be contributing to your exhaustion.

One set of medication made me fall asleep at work! It might be worth considering lifestyle issues - my triggers are lack of sleep and stress. Keep a note of when seizures happen and see if a pattern emerges. Also, contact the Expert Patients Programme (www.expertpatients.nhs.uk), an NHS-run project that helps people come to terms with and manage long-term medical conditions. I work for the project and have found it helpful in dealing with the frustration and challenges that come with epilepsy.

· Catherine Wilson works for the Expert Patients Programme, which supports people with long-term medical conditions

Gus Baker

The neuro-psychologist

Most people with epilepsy have some attention and memory problems. I teach memory-enhancing methods, and my booklet Memory Problems and Epilepsy is available from Epilepsy Action (0808 800 5050; www.epilepsy.org.uk). Your worries are natural - around 30 per cent of those with epilepsy suffer from anxiety, not surprising given the unpredictable nature of seizures. If it's not possible to control your seizures, think about ways to manage your epilepsy better.

Cognitive behavioural therapy (CBT) helps you to think differently about your problems. For example, there will be days when you don't have seizures, and I'd encourage you to get involved in as many activities as possible, as this reduces anxiety and makes you realise there is life beyond your illness. Ask your GP to refer you to a specialist epilepsy centre - along with a support group, this will keep you up to date with the latest breakthroughs and advice.

· Gus Baker is professor of neuro-psychology at Liverpool's Walton Centre for Neurology and Neurosurgery

· If you have a health question for our experts, email health@observer.co.uk

 

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