What inspired you to write a book about your experiences of living with epilepsy and what period of your life does it cover?
I began writing Diary of an Epileptic as a way of coping. A psychologist once suggested that writing things down might help when everything felt overwhelming. What started as private notes gradually became a book.
I was diagnosed with epilepsy at thirteen, although my seizures began earlier. Teachers believed I was daydreaming in class. Later, we discovered these were absence seizures, but getting a diagnosis I didn’t understand was terrifying. Diary of an Epileptic follows my journey from those early seizures through years of medication changes, hospital admissions and specialist investigations. I underwent SEEG, or stereo electroencephalography, where electrodes are placed into the brain to identify where seizures start. That led to LITT (Laser Interstitial Thermal Therapy), a minimally invasive procedure that uses heat to destroy seizure causing tissue.
For four months after surgery, I was seizure free. Sadly, my epilepsy returned and has since developed into a complex network that cannot currently be operated on. While this is my story, I know many families face very different outcomes. The book is about resilience and identity as much as it is about treatment.
You also share your experiences and knowledge about epilepsy with people online. What kind of response do you get there?
The response has been overwhelmingly supportive. Online epilepsy groups include people living with seizures as well as parents, carers and friends. Some experience only occasional seizures. Others have them daily. What connects everyone is the effort to manage an unpredictable condition.
People share medication experiences, advice after tonic clonic seizures and reassurance during difficult periods. The phrase I see pretty frequently is, “Was it just me?” That shared understanding reduces isolation. Despite the seriousness of epilepsy, these spaces often feel compassionate and hopeful.
You made a powerful video about the surgery you had. Can you explain how that changed your life?
After years of seeking NHS funding, being approved for LITT felt life changing. Doctors had identified that my seizures began deep in the occipital lobe, an area involved in visual processing. Traditional surgery would have risked permanent loss of part of my vision. LITT offered a safer approach.
Recovery was challenging, but those four seizure free months gave me independence I had never had the chance to feel. I walked to the shops alone and began reducing medication. For that short time, epilepsy did not dictate every decision. That glimpse of freedom showed me how much effective treatment can transform daily life for both individuals and families.
What difference do you hope that research into epilepsy can make for people like you?
My epilepsy is drug resistant, meaning medication does not fully control it. Surgery is no longer an option because my seizures arise from a network rather than a single focal point. This is why research is vital.
I hope research leads to better treatments, improved understanding of seizure networks and advances in gene and targeted therapies. I also hope it helps prevent SUDEP (Sudden Unexpected Death in Epilepsy), which too many families have experienced. Hope grounded in science continues to matter.
Do you plan to write more? How else will you continue advocating for people with epilepsy?
Yes. I plan to continue writing and speaking openly about epilepsy. I want people to understand what the condition feels like emotionally as well as medically. Through my YouTube channel, I answer questions people are often afraid to ask. If sharing my story helps someone feel less alone or supports research that improves outcomes, then it is worthwhile.
Madeline’s book is available to buy now.
