Urinary incontinence, or the loss of bladder control, is one of the urinary symptoms some people with epilepsy experience around the time of a seizure.

Many MyEpilepsyTeam members have reported experiencing incontinence during epileptic seizures. “It is not unusual for me to become incontinent,” wrote one member. Another explained, “I have a hard time describing what a seizure feels like, or how my seizures feel. But there is one thing that’s not subjective: urinary incontinence.”

Although urinary incontinence can be frustrating, challenging, and embarrassing, there are ways you can manage this symptom. Here, we will take a look at members’ thoughts on urinary incontinence with epilepsy, including how it affects them and what they do to manage incontinence on a daily basis.

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Why Do Seizures Sometimes Cause Urinary Incontinence?

Urination (clinically referred to as micturition) is a complex process — it relies on the coordination of the spinal cord, bladder, and multiple regions of the brain.

Urination problems are common in neurological disorders (those affecting the brain, peripheral nervous system, and spinal cord), including epilepsy. In epilepsy, the abnormal electrical activity in the brain that happens during seizures can disrupt the pathways involved in regulating urination, leading to incontinence.

Researchers have noted that more research and case studies are needed to explore the relationship between epilepsy and urinary dysfunction. It’s also worth noting that urination itself has been known to trigger seizures — a condition known as reflex epilepsy.

Incontinence is more likely to occur with generalized tonic-clonic seizures, though it can happen with other seizure types as well.

Urinary Incontinence in Tonic-Clonic Seizures

Urinary incontinence is commonly reported as occurring at the end of generalized tonic-clonic seizures (previously known as grand mal seizures).

During a tonic-clonic seizure, the electrical activity in the brain can disrupt the pathways that normally coordinate bladder control. Bladder contraction or relaxed sphincter muscles may play a role, but the exact mechanism is more complex than a single muscle response.

Urinary Incontinence in Absence Seizures

Absence seizures cause a person to lose awareness or stare blankly into space for several moments, followed by a quick return to normal alertness.

Unlike tonic-clonic seizures, absence seizures don’t usually involve muscle stiffening, and urinary incontinence isn’t considered typical of this seizure type. If incontinence does occur alongside symptoms like these, let your doctor know, since it may point to a different seizure type or another cause.

Can a Urinary Tract Infection Cause Seizures?

A urinary tract infection (UTI) can indirectly increase the risk of incontinence during a seizure, but it doesn’t trigger seizures on its own.

However, being sick from a UTI can make seizures more likely if you already have epilepsy. Fevers, dehydration, and poor sleep that often come with a UTI are known seizure triggers, and feeling too unwell to take your medicine on schedule can raise the risk even more.

Some antibiotics used to treat UTIs can also interact with seizure medicines, either raising their levels in your blood or making them less effective. Let the doctor treating your UTI know you have epilepsy and, if possible, check with your neurologist before starting a new antibiotic.

UTIs and Seizures in Older Adults

Older adults can face a couple of extra challenges when a UTI and epilepsy overlap.

UTIs are especially common in older adults, and they often show up differently than they do in younger people. Instead of the classic burning or urgency, a UTI in an older adult may show up as sudden confusion or disorientation instead.

This can make things tricky if you also have epilepsy, since confusion is a normal part of recovering from a seizure, too. It may be hard to tell whether new confusion is postictal — the recovery period right after a seizure — or a sign of an infection.

Consider mentioning any new or unusual confusion to a doctor, especially if it doesn’t clear up the way your postictal symptoms usually do.

Dealing With Embarrassment

MyEpilepsyTeam members commonly discuss the embarrassment of incontinence. Members take a wide range of approaches to dealing with feelings of anxiety or embarrassment. One member said it’s helpful to remind themself that epilepsy alone is challenging enough, and that it’s made them more resilient: “I don’t care anymore. Most people couldn’t handle what we go through on a daily basis.”

Another member shared their way of coping with embarrassment after accidents: “I have had that problem too, every time I have a seizure. I know it is embarrassing, but the one good thing for me is that it has always happened around people who don’t know me, and I don’t see them ever again. That is a blessing for me.”

Another member shared how they are looking for new tools to help them cope: “Does anyone know of any other anti-anxiety tabs? I don’t want to leave our home or do anything new because I’m so frightened of having a seizure and being incontinent publicly.”

If you experience worry or anxiety about the possibility of incontinence, you’re not alone. Talk to your healthcare provider. They may be able to refer you to a mental health specialist who can discuss different treatment and therapy options with you based on the type and severity of your anxiety.