A recent article published by Dr. Jorge Burneo and colleagues in the journal Neurology has described what happens to people during the two years after they are diagnosed as having “drug-resistant” epilepsy (also referred to as “intractable” epilepsy). Epilepsy is diagnosed as “drug-resistant” after two trials of anti-seizure medications have failed to control seizures.

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What wasn’t surprising about this study is that only 1.2% of these patients had had seizure surgery within 2 years after diagnosis. This isn’t new – we all know that surgery is underused.

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What was surprising about this study is that 12% of the patients were deceased within two years after diagnosis. It is important to remember that mortality in epilepsy is 2-4 times higher than in the general population, and that much of the mortality occurs within the years shortly after diagnosis.

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What this means is that people should be referred to an epileptologist – or a comprehensive epilepsy centre – as soon as two medication trials have failed to control their seizures. People with drug-resistant epilepsy need access to an expert opinion, and specialized drugs, diet and/or surgery. Referral to an epilepsy specialist isn’t just a good thing for people with drug-resistant epilepsy – for some people, it is a matter of life and death.

2 Comments

  1. My grandson is 3 and has been on 3 to 5 medications? Seizures stopped then came back several months later. How do we get in touch with a epilepsy specialist? We live in a small community. My daughter wants answers and a support group who she can speak to.

    Thank you for your time.

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