The diagnosis of epilepsy is incorrect in up to 20% of cases so should be revisited if attacks are not responding to treatment. We present a case of long QT syndrome that remained undiagnosed in the epilepsy clinic for 15 years until a near-fatal arrhythmia revealed the diagnosis and allowed effective treatment of her attacks. We hope this near miss raises awareness of long QT syndrome as a potentially fatal, rare but treatable condition that neurologists must consider in people with a label of refractory epilepsy. We provide practical pointers to increase the chance of early diagnosis and explore the impact of a late diagnosis for the patient and her family.
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Correction notice This article has been updated since it was published Online First. The author name Viva Levee was incorrectly spelt as Viva Lee.
Contributors DW provided clinical care to the patient and conceived the article and reviewed the manuscript. JA provided clinical care to the patient and supported the patient in writing and reviewed the manuscript. VL performed the literature review and wrote the discussion. CMG reviewed the clinical case notes and wrote the clinical case, wrote the manuscript and created the figures.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Parental/guardian consent obtained.
Provenance and peer review Not commissioned. Externally peer reviewed by Paul Cooper, Manchester, UK and Peter O’Callaghan, Cardiff, UK.
Data sharing statement There are no further data.