Living With Epilepsy and Incontinence: Real Stories of Resilience and What Actually Helps

Epilepsy is already a demanding condition to navigate. Managing seizures typically means working through medications, doses, and side effects — often a long process of trial and error before something works.

For many people, incontinence is part of that picture too. As many as 40% of people with epilepsy experience bladder or bowel incontinence.¹ For some, it happens only during a seizure. For others, it becomes more consistent over time, whether from the underlying neurological condition, medication effects, or mobility changes.

These three NorthShore customers manage both — one personally since childhood, one as a parent, one who turned decades of complexity into advocacy. Here's what each of them found.

The Emotional Weight of Managing Both

Living with incontinence can feel isolating on its own. Paired with epilepsy, the anxiety compounds: the fear of a seizure and the fear of an accident that might follow it, often in public, often without warning.

Some people also still face judgment for how they choose to manage it.

Jamie W. began experiencing incontinence as a child and was diagnosed with epilepsy at nine. He has been criticized over the years for wearing adult diapers, including by some medical professionals, even though it's what gives him confidence and independence.

"I have been judged over the years and made fun of for having to wear diapers… I have tried medications, some work but the side effects from the meds are horrible… I am glad NorthShore diapers are here to help all of us who are incontinent."

Jamie's experience is a reminder that the stigma around incontinence products can be as difficult as the condition itself — and that choosing protection that works isn't giving up on anything. It's what makes the rest of life possible.

When Finding the Right Fit Is Its Own Challenge

For families managing epilepsy alongside developmental disabilities, product fit can be a significant obstacle. Standard sizing assumes a standard body, and many people fall outside it.

Amy R.'s daughter was diagnosed with epilepsy at just six months old, which caused irreversible developmental delays. She experiences incontinence, and finding protection that fit was a years-long search — too small for most adult diapers, too big for children's sizes.

"We searched and tried every type of diaper out there and finally found the overnight diapers from NorthShore… They prevent embarrassing leaks and have saved our chairs and couches."

For families dealing with overnight leaks, reliable protection isn't just about convenience. It means better sleep for everyone in the household, less laundry, and more energy available for the rest of caregiving.

MegaMax® tab-style adult diapers are available from XS through 3XL, fitting waist sizes from 18 to 96 inches, with sizing scaled proportionally rather than simply widened from smaller sizes — which matters for anyone who has struggled to find a product that fits their body rather than an average one.

Making Ordinary Moments Feel Extraordinary

Adam L. has had a complicated medical history since infancy, including years marked by flurries of seizures. Through all of it, what he's valued most is consistency.

"This past summer I committed to round-the-clock use: 1-2 GoSupreme® daytime for easy moves, MegaMax® night for locked-down sleep. These mornings in my hillside neighborhood, starting at the local cafe with sunlight spilling over the river view, are the quiet victories. I sip slow, journal ideas, chat with regulars — no urgency clock ticking. Thank the process for these ordinary moments that feel extraordinary… NorthShore met my marathon with mastery, flipping 'complicated' to 'unstoppable.'"

With protection he doesn't have to think about, Adam has turned his attention outward.

"I'm already channeling this clarity into bigger issues — partnering with national foundations for epilepsy and hydrocephalus to reshape how we talk about overlapping conditions, because if my story can light one path, imagine what a network can do."

Adam's story makes a point worth sitting with: a good quality of life often isn't about anything dramatic. Sometimes it's a slow coffee, a conversation with a regular, and no urgency clock ticking in the background.

Frequently Asked Questions

Can epilepsy cause incontinence?
Yes. As many as 40% of people with epilepsy experience bladder or bowel incontinence.¹ It can occur during a seizure, in the postictal recovery period afterward when awareness and reaction time are still returning, or more consistently over time due to the underlying neurological condition, mobility changes, or medication side effects.

How can caregivers manage overnight leaks for someone with epilepsy?
Fit is the first thing to check, since even a highly absorbent product will leak if it doesn't sit correctly. MegaMax® is available from XS through 3XL for a wide range of body sizes, and EternaDry® Booster Pads can add capacity for higher-output nights. NorthShore's Care Experts can help troubleshoot sizing and fit directly.

1.  Epilepsy Disease. Incontinence and Epilepsy.