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.


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.


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.


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.


  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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