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

🎧 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

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

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 00:22 Meet Simona Balestrini 02:20 What Transcranial Magnetic Stimulation Actually Is 03:47 How Simona Uses TMS in Epilepsy Research 05:56 What TMS Reveals About Genetic Epilepsies 09:50 Why Safety Matters in Magnetic Brain Stimulation 12:09 Could TMS Guide or Improve Treatment? 14:31 Looking Ahead: The Future of TMS in Epilepsy 14:57 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

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

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 👇🏻 https://www.youtube.com/@EpilepsySparksInsights

🌐 More Epilepsy Sparks Insights 👇🏻

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

🌐 More about Yanin 👇🏻

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

- Facebook https://www.facebook.com/epilepsysparks

- TikTok https://www.tiktok.com/@epilepsysparks

Sexual health in epilepsy is vital - but many clinicians and patients hesitate to address it. 💜

Epileptologists Dr. Brad Kamitaki and Dr. Lucas Orellana join Torie Robinson for a warm, giggly, and open conversation on:

• Why clinician confidence matters in sexual health discussions
• Cultural barriers that can silence important conversations
• Creating safe spaces for patients
• What’s coming up at the IBE Lisbon 2025 conference!

🎧 Listen now to break barriers with us - and maybe share a laugh along the way.

🎧 Listen on all platforms 👇🏻 https://www.youtube.com/@EpilepsySparksInsights

🌐 More Epilepsy Sparks Insights 👇🏻

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

🌐 More about Brad & Lucas 👇🏻

www.torierobinson.com/epilepsy-sparks-insights/brad-katmitaki-lucas-orellana-sexual-health-epilepsy-clinician-patient-confidence

🌐 More about the conference 👇🏻

https://www.ilae.org/congresses/36th-international-epilepsy-congress/section/sectionid/1

👕 Check out our cool merch 👇🏻

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

📖 Chapters

- Intro

- Meet Brad & Lucas

- Challenges in Discussing Sexual Health

- Patient Perspectives on Sexual Health

- Cultural Influences on Conversations about Sex

- Experiences in Discussing Sexual Health with Patients

- Evolving Medical Education and Open-Mindedness

- Interactive Learning and Role Play at the Conference

- 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