Epilepsy Sparks Insights

We discuss:

Why epilepsy is up to four times more common in prison populations

The role of traumatic brain injuries, substance use & mental health

Barriers to accessing epilepsy specialists behind bars

Misuse, mistiming, & under-optimisation of anti-seizure medications

The continued use of rectal diazepam and lack of rescue treatment awareness

Increased SUDEP risks for people with epilepsy in prisons

How NICE guidelines should be improving care - but often aren’t

What needs to change to ensure prisoners get the epilepsy care they are entitled to

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More about Karen McLeod 👇🏻

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The ILAE Academy is changing how clinicians and researchers learn about the epilepsies! Prof. Gagandeep Singh, Chair of the ILAE Education Council, joins Torie to explain how this innovative, self-paced, and structured platform is helping to shape the next generation of epilepsy specialists!

We discuss:

🔗 More about episode (inc. transcription) 👇🏻

🤩 More about Gagandeep 👇🏻

🎓 The ILAE Academy

https://ilae-academy.totaratalent.com 

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https://www.epilepsysparks.com/glossary 

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How much do carers really contribute to epilepsy care, & why are their struggles so often invisible? 💜

Dr. Florien Boele, a researcher in psychosocial oncology & caregiving, talks about the essential but often overlooked role of unpaid carers for adults with epilepsy.

Florien talks with Torie about:

👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.

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🤩 More about Florien 👇🏻

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🔤 Learn key terms related to the epilepsies and neuroscience here 👇🏻

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Did you know seizure diaries in LGS & Dravet often capture less than half of seizures?! Today we hear from Dr. Ewan Nurse, an engineer & epilepsy researcher in Melbourne, who shares research into seizure reporting in developmental & epileptic encephalopathies (DEEs).

We explore why seizure diaries miss so many seizures, how carers sometimes log non-seizure events, and what that means for families and clinicians. Ewan also talks about the promise & limits of wearable devices, EEG headbands & implants, and why collaboration between engineers, clinicians, carers & families is essential for the future of epilepsy care.

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https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-eeg-dees-dravet-lgs 

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📖 Chapters

00:00 Intro

14:30 Understanding Developmental and Epileptic Encephalopathies

17:57 Future of Seizure Tracking Technology

21:01 Collaboration Between Clinicians and Engineers

23:52 The Broader Impact of Epilepsy Beyond Seizures

00:00 Conclusion & Thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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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.

🌐 More about Ewan👇🏻

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

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https://youtu.be/rP7sTgSSiik 

📖 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

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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In this second episode with Dr Phillip Pearl, we explore the human side of rare epilepsies: what drives him as a paediatric neurologist, how advocacy transforms progress, and why research in ultra-rare conditions can change the lives of people with common disorders. We also tackle difficult but vital topics - SUDEP, depression, and suicide in epilepsy - and end on a hopeful note with music and the brain!

🌐 More about Phillip 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/phillip-pearl-rare-epilepsies-sudep-neurology-journey  

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🎧 Watch the chat on YouTube 👇🏻

https://youtu.be/scBYPashBAs 

📖 Chapters

00:00 – Intro

00:56 – Meet Dr Phillip Pearl

01:17 – What keeps you going, as a paediatric neurologist

03:19 – Choosing paediatric neurology

05:06 – Falling in love with neurology

06:25 – Future of metabolic epilepsies

07:30 – Gene therapy breakthroughs

09:44 – SUDEP & risk awareness

11:18 – Depression, mortality, & suicide in epilepsy

11:55 – The intersection of music and epilepsy

12:28 – Conclusion & thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Neurologist Dr Phillip Pearl (Boston Children’s Hospital / Harvard Medical School), joins Torie to explore inherited metabolic epilepsies. He explains why include far more than seizures, shares powerful stories (including vitamin B6-responsive epilepsy), and traces the progress from mid-20th century discoveries to today’s targeted therapies -  including research into gene therapy!

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https://www.torierobinson.com/epilepsy-sparks-insights/phillip-pearl-inherited-metabolic-epilepsies-gene-therapy 

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https://youtu.be/yJ31k_6xNNg 

📖 Chapters

00:00 Intro

00:00 Meet Philip

02:52 Understanding Inherited Metabolic Epilepsies

06:08 The Role of Genetics in Epilepsy

08:58 Transformational Treatments in Epilepsy

12:05 The Future of Epilepsy Treatment

00:00 Conclusion & Thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

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Asst. Prof. Simona Balestrini, an adult and paediatric neurologist, shares her epilepsy research into the use of transcranial magnetic stimulation (TMS) as a tool for understanding genetic forms of epilepsy! She explains the methodology of TMS, its applications in clinical and research settings, and the importance of safety in its use for people with an epilepsy. The chat also explores future directions for TMS, including its potential as a treatment option!

📖 Chapters

00:00 Intro

🎞️ Watch on YouTube 👇🏻

https://youtu.be/hyLxVtc6ud8 

🌐 More Epilepsy Sparks Insights 👇🏻

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🌐 More about Simona 👇🏻

https://www.torierobinson.com/epilepsy-sparks-insights/simona-balestrini-transcranial-magnetic-stimulation 

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com 

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks 

- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social 

- Instagram https://www.instagram.com/epilepsysparks 

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An epilepsy specialist neurologist develops an epilepsy! In this fascinating episode, we delve into the extraordinary journey of Dr. Jim Morrow, a retired consultant neurologist who ends up developing the disease himself! Jim shares his unique perspective on the challenges and ironies of navigating life with an epilepsy; from his initial diagnosis of Autoimmune Limbic Encephalitis due to a Voltage-Gated Potassium Channel Antibody, to the impact on his professional and personal life. Tune in also to learn about Jim’s fun, fictional books (with a medical twist) - out now!

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https://www.torierobinson.com/epilepsy-sparks-insights/jim-morrow-neurologist-diagnosed-epilepsy-autoimmune-encephalitis 

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com 

📖 Chapters 

00:00 Intro

00:00 Meet XXX

00:00 Conclusion & Thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary  

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks 

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Paediatric Neurologist Dr Yanin Rivera shares how cultural beliefs, limited access to healthcare, education, and innovative telemedicine solutions are shaping the landscape of epilepsy treatment, care, and prevention in Mexico!

🎧 Listen on all platforms 👇🏻

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https://www.torierobinson.com/epilepsy-sparks-insights/yanin-rivera-mexico-lmic-culture-telemedicine 

👕 Check out our cool merch 👇🏻

https://epilepsy-sparks.creator-spring.com 

📖 Chapters 

00:00 Intro

00:00 Meet Brad & Lucas

00:00 Conclusion & Thanks

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 https://www.epilepsysparks.com/glossary 

📲 Join us on social media!

- LinkedIn https://www.linkedin.com/company/epilepsy-sparks 

- Bluesky https://bsky.app/profile/epilepsysparks.bsky.social 

- Instagram https://www.instagram.com/epilepsysparks 

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