Nearly 40 percent of people with epilepsy experience at least one urinary symptom, researchers say. The most common of these symptoms is urinary incontinence, or the loss of bladder control. 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.
Urinary incontinence presents an added challenge to many people living with epilepsy. At first, some people with seizure disorders don’t even realize that it is a common symptom. As one MyEpilepsyTeam member asked others, “Can having epilepsy make you have incontinence problems? ‘Cause I keep pooing and wetting myself.” Another member reported, “I used to have seizures in my sleep. I have incontinence issues when I have bad seizures. I’d wake up sometimes and wonder why I peed the bed.”
The fact is, urinary incontinence is common in people with epilepsy. Despite its commonality, however, the symptom often causes feelings of frustration and embarrassment. “Had a huge seizure and was incontinent of both urine and stool,” wrote one MyEpilepsyTeam member. “Can’t use my legs after a seizure. I was humiliated.”
Another member shared, “I have incontinence issues when I have a full-on seizure … It is very embarrassing when you pee yourself at work … I have no clue that it’s about to happen. Then, you wake up soaked.”
Even if others around you are understanding, the hassle and embarrassment of cleaning up after an accident can make the experience even more challenging.
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 occurs during seizures can disrupt the pathways involved in regulating urination, leading to incontinence.
As one recent study notes, more research and case studies are needed to explore the relationship between epilepsy and urinary dysfunction. It is also worth noting that urination itself has been known to trigger seizures — a condition known as reflex epilepsy.
Two different types of seizures are more likely to cause urinary incontinence: tonic-clonic seizures and absence 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 body’s muscles contract (tighten). The contraction of the bladder can result in urination. Conversely, the relaxation of the urinary sphincter muscles during a tonic-clonic seizure can also cause a person to urinate.
Absence seizures (petit mal seizures) cause a person to lose awareness or stare blankly into space for several moments. Unlike tonic-clonic seizures, which cause stiffening of the muscles, absence seizures may cause a loss of consciousness. This, in turn, may confuse the brain’s signals to keep urine in the bladder, leading to urinary incontinence.
If you experience urinary incontinence during seizures, there are several steps you can take to prepare for or prevent accidents. Talk to your neurology specialist or health care provider if you are concerned about incontinence during seizures or if this symptom is affecting your daily life and well-being.
You can purchase specialized undergarments that offer protection against urinary leaks or incontinence. These garments are highly absorbent and come in a range of styles, sizes, and fits. Some are made from cloth and are designed to be washed and reused, while others are disposable. The right style and material will depend on your unique wants, needs, and preferences.
Several MyEpilepsyTeam members have shared that they wear protective garments to help provide assurance in case of a seizure. “I do wear incontinence pants,” wrote one member. Another shared that they “had another grand mal seizure, and I had to wear incontinence diapers.”
If you have experienced incontinence during seizures, it may be a good idea to bring an emergency kit with you in case of accidents. This kit can be kept at home, school, work, or in the car, and may include:
Knowing that you have the right supplies on hand can help you feel more confident when taking trips, going to work or school, or simply going out in day-to-day life.
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.”
If you experience extreme worry or anxiety about the possibility of incontinence, you’re not alone. Talk to your health care provider. They may be able to refer you to a mental health specialist, such as a psychiatrist. They also may suggest medications that may help you manage anxiety around going in public, like propranolol (Inderal). Finding the right medication may take some time, however, and one member reported side effects from taking propranolol.
“Does anyone know of any other anti-anxiety tabs I could suggest to my general practitioner or neurologist for anxiety?” asked one MyEpilepsyTeam member. “My hubby is getting worried because I don’t want to leave our home or do anything new. [It’s] because I’m so frightened of having a seizure and being incontinent publicly. The propranolol stopped this fear, but it also felt like I’d stopped breathing.”
On MyEpilepsyTeam, the social network for people with epilepsy and their loved ones, more than 107,000 people come together to ask questions, get advice, and share their stories about life with epilepsy.
Have you dealt with incontinence during seizures? How have you managed it? Share your experience and tips in the comments below, or by posting on MyEpilepsyTeam.