In this first half of our chat with Dr. Ewan Nurse, we explore why seizure reporting matters so much in epilepsy care. From forgotten focal seizures to the challenges of eyewitness accounts, Ewan explains why accurate seizure diaries are vital yet so difficult to achieve. We discuss research findings showing that most minor seizures go unreported(!), why some go over-reported(!), the role of memory, stigma, and psychology in diary-keeping, and the importance of involving carers in the process.

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https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-silent-witness

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📖 Chapters 00:00

Intro – How reliable are seizure diaries really?

01:09 Meet Dr. Ewan Nurse - Engineer & epilepsy researcher from Melbourne

02:05 Why seizure reporting is fundamental for diagnosis & treatment

03:46 Landmark study: only 1 in 3 seizures recorded during video EEG

04:55 Overreporting - when non-seizure events make it into diaries

07:37 Why subtle seizures are the hardest to track

09:28 Psychology, identity & why some people don’t record their seizures

10:12 The role of witnesses in reporting & why so many seizures are missed

11:26 Cool paper on the topic “The Silent Witness, the unseen gaps in eyewitness recognition of seizures"

13:50 Education, collaboration & improving seizure reporting for better care

14:10 Closing thoughts + what’s coming in Part 2

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