Essential Facts About Epilepsy and Hydrocephalus

Epilepsy and Hydrocephalus: Understanding the Connection

Epilepsy is common in people with hydrocephalus. Epilepsy is a brain disorder that causes unprovoked, recurrent seizures. Seizures occur when abnormal electrical activity develops in the brain and may cause changes in awareness, behavior, sensation, movement, or consciousness.

In the United States, it is estimated that 1.2% of the population has active epilepsy (Zack & Kobau, 2017). People with hydrocephalus have an increased risk of developing epilepsy. Among individuals with shunted hydrocephalus, studies have reported epilepsy rates ranging from 20% to 40%; however, risk varies considerably depending on the underlying cause of hydrocephalus and treatment-related factors, including surgical complications and infection (Schubert-Bast et al., 2019).

What Do Seizures Look Like?

Seizures can look different from person to person and are not always dramatic or easy to recognize. Some seizures involve full-body movements, while others may be more subtle.

Common signs may include:

• Staring spells or brief unresponsiveness
• Sudden confusion or difficulty speaking
• Jerking or stiff movements of the arms or legs
• Loss of awareness or consciousness
• Repetitive movements such as lip-smacking or hand motions

Understanding what seizures can look like may help individuals and caregivers recognize when something is not typical.

How Common Is Epilepsy in People With Hydrocephalus?

Past studies have shown:

• 4.5% of people with normal pressure hydrocephalus (NPH) have epilepsy (Larsson et al., 2018).
• 11% of children with spina bifida and hydrocephalus have epilepsy (Persson et al., 2006; Koomen et al., 2026).
• Up to 35% of children with congenital hydrocephalus (diagnosed before or at birth) have epilepsy (Persson et al., 2006; Fernell et al., 1988).
• 44-70% of children with posthemorrhagic hydrocephalus of prematurity have epilepsy (Battaglia et al., 2005; Tully et al., 2016).

Does Shunt Placement Affect Epilepsy Risk?

Shunt placement independently affects epilepsy risk, but its impact is smaller than the underlying hydrocephalus cause. Shunt complications (revisions, infections) are more significant risk amplifiers than the initial insertion.

Shunt Complications Are Stronger Risk Factors

• Shunt revisions: Epilepsy risk increases stepwise (Schubert-Bast et al., 2019
• Shunt infection: Doubles epilepsy risk (Tully et al., 2016).
• Early shunting, shunt complications, infection, and high revision number were significant risk factors for postshunt seizures (Majed et al. 2013).

Factors That Increase Seizure Risk in Hydrocephalus

Past studies have shown:

• Surgical infection may double the risk of developing seizures (Tully et al., 2016, Schubert-Base et al., 2019)).
• Seizures are not likely to occur at the time of shunt malfunction (Goel et al., 2024 & Johnson et al., 1996).

Common Seizure Triggers

While seizures are not always predictable, some individuals notice patterns or triggers that may increase their risk. These can include:

• Lack of sleep
• Stress or emotional changes
• Illness or fever
• Missed or inconsistent medication use

Tracking patterns over time may help individuals and families better manage seizure risk.

When Epilepsy Surgery Leads to Hydrocephalus

The relationship between hydrocephalus and epilepsy can also work in the opposite direction. Some people with epilepsy who undergo a hemispherectomy—a surgical procedure used to treat severe, drug-resistant seizures—may develop hydrocephalus as a complication of the surgery (Chen et al., 2023). In many cases, hydrocephalus develops months or even years after the procedure, highlighting the importance of long-term monitoring (Lew et al., 2013).

Most children and adults with both hydrocephalus and epilepsy can achieve seizure control with medication. However, approximately one-third of people with epilepsy continue to have seizures despite treatment with antiseizure medications (Asadi-Pooya et al., 2023; Perucca et al., 2023). This rate is similar to that seen in the broader epilepsy population (Laxer et al., 2014; Kwan & Brodie, 2000). For these individuals, non-pharmacologic treatment options including epilepsy surgery, neuromodulation therapies, or dietary therapy may be considered.

What to Do If a Seizure Occurs

Knowing how to respond during a seizure can help keep someone safe:

• Stay calm and remain with the person
• Gently guide them to the ground if needed
• Turn them on their side to help keep the airway clear
• Do not place anything in their mouth
• Time the seizure

Seek emergency medical care if a seizure lasts longer than five minutes, if multiple seizures occur without recovery in between, for seizures occurring in water, or if the person is injured or it is their first seizure.

Living With Epilepsy and Hydrocephalus

Managing epilepsy alongside hydrocephalus may require ongoing care and adjustments. This can include:

• Taking medications consistently as prescribed
• Working with a neurologist or epilepsy specialist
• Planning for school, work, and daily activities
• Recognizing patterns in symptoms and recovery

For many individuals, seizures can be managed with the right treatment plan and support.

Key Takeaways: Epilepsy and Hydrocephalus

Living with both hydrocephalus and epilepsy can feel complex, but understanding the connection between the two conditions is an important step. With awareness, the right care team, and a clear plan, many individuals can manage seizures and continue to live full, active lives.

For more information on epilepsy/seizures and hydrocephalus, follow the links provided in the text.

For additional support and educational resources, we encourage you to contact the Epilepsy Foundation or the Brain Recovery Project.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025. We would like to thank Erin Fecske, DNP, APRN, CNRN, CPNP-PC, FAES, for her valuable contribution and expert input.

This article is designed to provide helpful information on the subjects discussed. It is not intended as a substitute for treatment advice from a medical professional. For diagnosis or treatment of any medical condition, consult your doctor.