Around 20–30% of people with an epilepsy don’t respond well to anti-seizure medications - so what happens next? Dr. Ricardo Morcos (UCL) 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

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 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

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

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 👇🏻 https://www.torierobinson.com/guests/florien-boele

👕 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://www.youtube.com/@EpilepsySparksInsights

🔤 Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻 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

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

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

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

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!

👕 Check out our cool merch 👇🏻

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

🌐 More about Phillip 👇🏻

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

🌐 More Epilepsy Sparks Insights

👇🏻 https://www.torierobinson.com/epilepsy-sparks-insights

🎧 Watch the video 👇🏻

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

📲 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