Beyond what people see
Epilepsy: The Untold Side
A growing epilepsy reference project bringing together evidence-led information, research, lived experience, history and awareness work.
Welcome in
You do not have to explain everything here.
Come here to understand epilepsy in more depth, explore the evidence behind difficult questions, read lived experience, and follow the science, history and realities that are often left out of everyday explanations.
The hidden. The unheard. The misunderstood. The real.
Start here
What do you need today?
Search the reference library, use practical epilepsy tools, or explore the visual side of The Untold Side.
Find information
Search across the whole site for a subject such as focal seizures, SUDEP, MRI, memory or postictal recovery.
Not sure where to begin? Use Start Here →
Not sure what to call an experience? Try What Am I Experiencing? →
Use practical tools
Fill in or print an Emergency Passport, Medication List, Seizure Witness Record, Usual Recovery Record and Appointment Preparation sheet.
Explore Art & Awareness
See original visual work exploring epilepsy, recovery, memory, hidden activity and the experiences that clinical language cannot always show.
Epilepsy is more than a seizure
The Untold Side brings together evidence-led information, research, lived experience, history and awareness work. It is built for the parts of epilepsy that are often difficult to explain, easy to overlook or rarely discussed openly.
Understand
Clear explanations of seizure classification, diagnosis, treatment, recovery, cognition, sleep, safety and other aspects of epilepsy.
Explore
Go beyond the basics through deeper research, science, history and focused questions that need more room than a standard epilepsy leaflet can give them.
Hear lived experience
Read personal experiences and community contributions kept clearly separate from medical evidence, with permission and attribution where requested.
Featured reference
Postictal Recovery
The seizure may be over while recovery is still continuing. Explore confusion, memory, exhaustion, behaviour changes and the return towards a person’s usual baseline.
New & updated
See what has been added recently
New reference pages, lived-experience stories, historical research and science pieces are being added regularly.
Choose where you want to go
Understand
Use the permanent reference library for diagnosis, treatment, seizure types, recovery, safety and everyday epilepsy.
Going to an epilepsy appointment?
Take the questions you may not know to ask — including diagnosis, medication, safety, recovery and SUDEP.
Deep Dives
Take a closer look at focused questions, misunderstood details and subjects that need more room.
Stories
Read lived experience shared with permission and kept clearly separate from medical evidence.
History
Explore how laws, institutions, treatments, stigma and medical understanding changed over time.
Resources
Check the organisations, guidelines, research databases and evidence standards behind the site.
New historical archive
Epilepsy Through History
Explore the institutions, laws, treatments, eugenics and changing beliefs that shaped how people with epilepsy were understood and treated.
Latest from The Untold Side
Find us on Facebook
Follow the community side of the project, join conversations and keep up with new posts.