Epilepsy Sparks Insights

Understanding the Epilepsy Surgery Journey - Dr. Ricardo Morcos

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 
 

Why Epilepsy Is So Common in UK Prisons - Epilepsy Nurse: Karen McLeod

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

ILAE Academy: Global Training for Epilepsy Clinicians - Prof. Gagandeep Singh

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 

Carers in Epilepsy: Quality of Life, Hidden Costs & Research - Dr. Florien Boele

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

Improving Seizure Diaries in LGS, Dravet & DEEs – Dr. Ewan Nurse

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 

The Silent Witness: Why Most Seizures Go Unrecorded (Part 1) - Dr. Ewan Nurse

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 

Rare Epilepsies, Patient Advocacy, & Becoming a NEUROLOGIST- Phillip Pearl

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 

Metabolic Epilepsies & Gene Therapy – Phillip Pearl

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 

Magnetic Brain Stimulation in Epilepsy: Genetics, Research & Future Care - Simona Balestrini

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 Intro00:22 Meet Simona Balestrini02:20 What Transcranial Magnetic Stimulation Actually Is03:47 How Simona Uses TMS in Epilepsy Research05:56 What TMS Reveals About Genetic Epilepsies09:50 Why Safety Matters in Magnetic Brain Stimulation12:09 Could TMS Guide or Improve Treatment?14:31 Looking Ahead: The Future of TMS in Epilepsy14:57 Closing Thanks & Where to Learn More
 
🎞️ Watch on YouTube 👇🏻
https://youtu.be/hyLxVtc6ud8 
 
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights  
 
🌐 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 
- Facebook https://www.facebook.com/epilepsysparks
- TikTok https://www.tiktok.com/@epilepsysparks 

Neurologist Diagnosed with Epilepsy - You’ll Love His Positivity - Dr. Jim Morrow

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!
🎧 Listen to the podcast 👇🏻
https://epilepsysparksinsights.podbean.com  
 
🌐 More Epilepsy Sparks Insights 👇🏻
https://www.torierobinson.com/epilepsy-sparks-insights  
 
🌐 More about Jim 👇🏻
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 
- 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