Epilepsy Sparks Insights
Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson. **NOT FOR CLINICAL OR PATIENT DECISION-MAKING* Visit www.torierobinson.com & www.epilepsysparks.com.
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Episodes
Thursday Nov 27, 2025
Thursday Nov 27, 2025
Prof. Nicola Specchio shares insights into how regional and global collaboration can strengthen epilepsy care, highlighting the need for coordinated systems, improved pathways and fairer access to expertise. The episode also examines the impact of emerging scientific developments and how shared standards across countries could support better long-term outcomes for people living with an epilepsy.
We discuss: • Diagnostic delays and treatment access • Priorities for ILAE Europe • Cross-border collaboration • Networks for rare epilepsies • Precision medicine and biomarkers • Neuroimaging developments • Earlier intervention and improved outcomes
Check out:
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/global-epilepsy-care-challenges-opportunities
🌐 More about Nicola 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights-guests-/nicola-specichio
👕 Join the Epilepsy Sparks community with our merch 👇🏻https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch the Epilepsy Sparks Insights podcast on YouTube 👇🏻https://www.youtube.com/@EpilepsySparksInsights
📲 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
Facebook https://www.facebook.com/epilepsysparks
TikTok https://www.tiktok.com/@epilepsysparks
Thursday Nov 20, 2025
Thursday Nov 20, 2025
The epilepsies are a complex neurological disease, and patients, families, and clinicians all deserve clear, empowering information! Torie Robinson sits down with nurse, writer Cheryl Tveit and paediatric neurologist/epileptologist writer Dr. Charbel El Kosseifi. from Gillette Children’s Hospital to discuss their new Mac Keith Press book: “Epilepsy”. They explain how they simplified the science for everyone, highlighting crucial topics often ignored in clinic-like morbidities, driving, and the vital need for reassurance. An empowering publication!
We discuss:
How the new Gillette Children's Hospital & Mac Keith Press book makes complex epilepsy science accessible for everyone
The importance of plain language - not patronising, just clear
The book's value for med students, residents, and practicing physicians
Quality of life beyond seizures - school, work, relationships & mental health
Cognition, anxiety, and other common comorbidities
Writing with empathy and the voice of families
Why collaboration between patients, clinicians, and educators matters
🔗 More about episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/epilepsy-book-full-life-guide
👤👤 More about Cheryl & Charbel 👇🏻
Cheryl https://www.torierobinson.com/guests/cheryl-tveit
Charbel https://www.torierobinson.com/guests/charbel-el-kosseifi
📘 Get the book "Epilepsy" (Mac Keith Press) with 20% off 👇🏻
https://www.mackeith.co.uk/book/epilepsy - code: epilepsysparks20
👕 Join the Epilepsy Sparks community with our merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch the video-podcast 👇🏻
https://youtu.be/bHhtMfNxErw
📒 Glossary 👇🏻
https://www.epilepsysparks.com/glossary
Thursday Nov 13, 2025
Thursday Nov 13, 2025
This chat delves into the intricate relationship between the blood-brain barrier and epilepsy - particularly temporal lobe epilepsy! Claire, Chris, and Torie highlight the dysfunction of the blood-brain barrier in people with an epilepsy, the role of imaging techniques in assessing this dysfunction, and the outcomes of surgical interventions. Excitingly, Claire and Chris also explore future research directions aimed at targeting the blood-brain barrier to improve treatment outcomes!
🌐 More about the episode 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/claire-behan-chris-greene-blood-brain-barrier-temporal-lobe-epilepsy-neurosurgery
🌐 More about Claire https://www.torierobinson.com/guests/claire-behan
🌐 More about Chris https://www.torierobinson.com/guests/chris-greene
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Listen to the podcast 👇🏻
https://epilepsysparksinsights.podbean.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
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks
Thursday Nov 06, 2025
Thursday Nov 06, 2025
Around 20–30% of people with an epilepsy don’t respond well to anti-seizure medications - so what happens next? Dr. Ricardo Morcos (UCLH) joins host Torie Robinson to explain the epilepsy surgery journey: how people are assessed, what tests are involved, and how teams make decisions together.
We discuss:
The “tube map”(!) that helps explain this complex process
Why surgery isn’t talked about enough
Common myths & fears
What to expect from surgery & recovery
How neuromodulation, new medications & trials also fit in
This empowering conversation is for anyone affected by the epilepsies - patients, carers, and clinicians alike! Check out:
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-morcos-epilepsy-surgery-journey
🌐 More about Ricardo 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/ricardo-morcos
👕 Join the Epilepsy Sparks community with our merch 👇🏻https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights
🎞️ Watch the Epilepsy Sparks Insights podcast on YouTube 👇🏻https://youtu.be/QzIoLlRG1Lw
📲 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
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks
Thursday Oct 23, 2025
Thursday Oct 23, 2025
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
🔗 More about episode 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/karen-mcleod-uk-prisons
More about Karen McLeod 👇🏻https://www.torierobinson.com/guests/karen-mcleod
👕 Join the Epilepsy Sparks community with our merch 👇🏻https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights
🎥 Watch the video 👇🏻https://youtu.be/2yKOxliR1pY
🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary 👇🏻https://www.epilepsysparks.com/glossary
📲 Connect with usWebsite https://www.epilepsysparks.comLinkedIn https://www.linkedin.com/company/epilepsy-sparksBluesky https://bsky.app/profile/epilepsysparks.bsky.socialInstagram https://www.instagram.com/epilepsysparksFacebook https://www.facebook.com/epilepsysparksTikTok https://www.tiktok.com/@epilepsysparks
Thursday Oct 16, 2025
Thursday Oct 16, 2025
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:
What the ILAE Academy is and who it’s for
How it keeps up with new discoveries
Why accessibility and affordability matter
The future of interactive, AI-based learning
🔗 More about episode (inc. transcription) 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/gagandeep-singh-ilae-academy
🤩 More about Gagandeep 👇🏻https://www.torierobinson.com/guests/gagandeep-singh
🎓 The ILAE Academy
https://ilae-academy.totaratalent.com
👕 Join the Epilepsy Sparks community with our merch 👇🏻https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights
🎞️ Watch episode on YouTube 👇🏻
https://youtu.be/PrYZyKrb4Ec
🔤 Learn key terms related to the epilepsies and neuroscience here 👇🏻
https://www.epilepsysparks.com/glossary
📲 Connect with us! 👇🏻
Website https://www.epilepsysparks.com
LinkedIn https://www.linkedin.com/company/epilepsy-sparks
Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
Instagram https://www.instagram.com/epilepsysparks
Facebook https://www.facebook.com/epilepsysparks
TikTok https://www.tiktok.com/@epilepsysparks
Thursday Oct 09, 2025
Thursday Oct 09, 2025
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:
Who carers are
The staggering £184 billion value that carers add to the UK economy
The personal costs of caregiving - sleep, stress, health, finances & relationships
Why epilepsy research rarely includes carers (compared with other diseases)
The importance of measuring carer outcomes through core outcome sets
Florien’s study to define what truly matters most to carers
👉🏻 Tune in to hear how research is beginning to highlight carers’ voices & why supporting them means supporting people with epilepsy too.
🔗 More about episode 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights/florien-boele-quality-of-life-carers-epilepsy
🤩 More about Florien 👇🏻 Dr. Florien Boele | Family caregiving, quality of life, & the epilepsies — Torie Robinson
👕 Join the Epilepsy Sparks community with our merch!👇🏻 https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights
🎧 Watch episode on YouTube 👇🏻https://youtu.be/7F7N3TvnMjM
🔤 Learn key terms related to the epilepsies and neuroscience here 👇🏻https://www.epilepsysparks.com/glossary
📲 Connect with us! 👇🏻
Website https://www.epilepsysparks.com
LinkedIn https://www.linkedin.com/company/epilepsy-sparks
Bluesky https://bsky.app/profile/epilepsysparks.bsky.social
Instagram https://www.instagram.com/epilepsysparks
Facebook https://www.facebook.com/epilepsysparks
TikTok https://www.tiktok.com/@epilepsysparks
Thursday Oct 02, 2025
Thursday Oct 02, 2025
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.
🌐 More about Ewan👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights/ewan-nurse-seizure-diaries-eeg-dees-dravet-lgs
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🎧 Listen to the podcast 👇🏻
https://epilepsysparksinsights.podbean.com
📖 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
📲 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
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks
Thursday Sep 25, 2025
Thursday Sep 25, 2025
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
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🎧 Watch on YouTube to the podcast 👇🏻
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
📲 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
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks
Thursday Sep 18, 2025
Thursday Sep 18, 2025
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
👕 Check out our cool merch 👇🏻
https://epilepsy-sparks.creator-spring.com
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights
🎧 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
📲 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
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks