Headaches and Hydrocephalus: Causes and Types Explained

Headaches are a common symptom experienced by people living with hydrocephalus.  People with hydrocephalus may experience a variety of headaches, and identifying the root cause is key to effective treatment.

Hydrocephalus involves an abnormal buildup of cerebrospinal fluid (CSF) in and around the brain, which can lead to increased pressure inside the head. This increased pressure is often a cause of headaches. However,  not all headaches are directly related to hydrocephalus or shunt issues.

Headaches can also occur after endoscopic third ventriculostomy (ETV), a procedure used as an alternative to shunts in some individuals with hydrocephalus. While headaches are not as common after ETV compared to shunts, they can still arise due to changes in CSF flow or pressure.

How Common Are Headaches in Hydrocephalus?

According to one study, 31% of individuals with normal pressure hydrocephalus (NPH) had headaches several times a month, compared to only 11% of control subjects (Larsson et al., 2017).

In a survey by the Hydrocephalus Association (HA), severe, disabling headaches were reported by 29% of children, 42% of adolescents, and 44% of adults treated for hydrocephalus in childhood (Rekate and Kranz,).

76% of patients with chronic ventriculomegaly (enlarged ventricles) experience headaches (Craven et al., 2019).

Causes of Headaches in Hydrocephalus

The causes of headaches in people with hydrocephalus can vary widely, depending on whether or not a person has a shunt and how well that shunt is functioning. Here are some potential reasons for headaches:

Shunt Malfunction (also known as Shunt Failure): If a shunt becomes blocked or fails, it can lead to increased intracranial pressure, causing headaches.  Shunt systems can also drain too much or too little, also resulting in symptoms from overdrainage or underdrainage.

Overdrainage (Low-Pressure Headaches): Overdrainage occurs when the shunt drains too much CSF, causing the pressure in the brain to drop too low. This leads to low-pressure headaches, which typically worsen when sitting or standing and improve when lying down. These headaches are often described as feeling like a “spinal headache” and can be very debilitating.  However, they usually do not affect a person’s level of alertness (other than being difficult to function due to the pain).

Underdrainage (High-Pressure Headaches): Underdrainage happens when the shunt fails to drain enough CSF, causing the pressure inside the head to build up. This results in high-pressure headaches, which are often worse in the morning or after lying down. People with underdrainage may also experience other symptoms, such as blurred vision, nausea, and vomiting.

For more insights on managing headaches related to hydrocephalus, watch our Ask the Expert videos on this topic. These videos offer guidance and information from medical professionals and a patient.

Intermittent Shunt Obstruction: In some cases, a shunt may experience periodic blockages, leading to intermittent obstruction. This can cause headaches that come and go depending on the shunt’s ability to drain CSF properly at a given time. The headaches associated with intermittent shunt obstruction may vary in intensity and can be unpredictable, sometimes resolving on their own as the obstruction clears temporarily. These types of headaches may not necessarily cause significant changes in imaging with CT or MRI scans, making diagnosis challenging.

Slit Ventricle Syndrome: Slit ventricle syndrome has been reported when the ventricles of the brain become very small due to prolonged shunting and the brain becomes ‘stiff’, making it hard for CSF to accumulate and the ventricles to enlarge. As a result, any increase in CSF results in a significant increase in pressure that can cause severe headaches, often accompanied by symptoms like vomiting and light sensitivity. These headaches are usually short in duration (10 to 90 minutes) and can resemble migraines. Unlike intermittent shunt obstruction, slit ventricle syndrome is more related to long-term changes in the brain’s structure due to chronic CSF drainage and may require surgical intervention if symptoms worsen over time.

It should be noted that shunt overdrainage with small, slit-like ventricles can show up with the same symptoms, but may require a different treatment.

To learn more watch our 2019 Adult Ask the Expert Video Series on Slit Ventricles Versus Slit Ventricle Syndrome and our session about Slit Ventricle Syndrome from our National Conference on Hydrocephalus.

Small Ventricles with Shunt Failure: In some cases, when a shunt fails, the ventricles in the brain cannot expand to accommodate CSF buildup, leading to persistent, progressively worse headaches.

The Role of Intracranial Pressure (ICP) in Headaches

Headaches in hydrocephalus are often related to fluctuations in intracranial pressure (ICP), which is determined by the balance between brain tissue, blood volume in brain vessels, and CSF. Any changes in one of these components must be compensated for by changes in the others to maintain normal pressure inside the head.

In hydrocephalus, this balance is disrupted because of an abnormal buildup of CSF. Typically, an increase in CSF volume leads to increased ICP, resulting in headaches. When a shunt is in place to help drain excess CSF, it can interfere with the brain’s natural ability to compensate for pressure changes, especially during activities like coughing, sneezing, or during rapid eye movement (REM) sleep. This inability to regulate ICP effectively may contribute to frequent headaches experienced by individuals with hydrocephalus.

Chronic Headaches in Hydrocephalus

Many individuals with hydrocephalus experience chronic headaches, which are headaches that persist over a long period of time, often daily or several times a week. Chronic headaches may not be directly tied to shunt failure or acute pressure changes. They could result from ongoing fluctuations in CSF pressure, tension and stress related to living with a chronic condition, or other long-term effects. These headaches can vary in severity and may be difficult to treat, requiring long-term management strategies. Chronic headaches often require a multifaceted approach, including lifestyle changes, pain management strategies, and close collaboration with a healthcare team to rule out other causes like shunt malfunction.

Other Types of Headaches in Hydrocephalus

In addition to shunt-related headaches and those caused by fluctuations in intracranial pressure, people with hydrocephalus may experience other types of headaches that are very common in the general population. These can be triggered by a number of factors and are important to consider when managing headaches in individuals with hydrocephalus. This is not a comprehensive list of headache types but highlights some of the more common ones:

Tension Headaches: Tension headaches are the most common type of headache experienced by the general population. They are typically described as a dull, aching pain around the forehead, or on the sides of the head (temples), at the top of the scalp, or along the back of the neck – all places where the muscles attach to the head. For people with hydrocephalus, the stress of managing a chronic condition or muscle tension from sitting in specific positions can trigger or worsen tension headaches.

Migraines:  People with hydrocephalus may also experience migraines, which are unrelated to the hydrocephalus itself. Migraines are usually characterized by relatively prompt onset, moderate to severe throbbing pain, nausea, vomiting, and sensitivity to light or sound. They often have vision changes as part of the headache, and can be caused by genetic or environmental triggers.

Cluster Headaches: Cluster headaches are characterized by severe, burning pain that occurs in cycles or clusters, often focused on one side of the head. They may be accompanied by eye redness, tearing, or nasal congestion. These headaches can be extremely intense but are less common in individuals with hydrocephalus.

Cervicogenic Headaches: Cervicogenic headaches are caused by issues in the neck or cervical spine and can radiate up to the head. For individuals with hydrocephalus, especially those who have undergone multiple surgeries or experience mobility issues, neck problems can lead to cervicogenic headaches.

Note: This list covers some common types of headaches, but there are many more that people without or with hydrocephalus can experience. For further information about other types of headaches or migraines, consult a neurologist or visit trusted resources like the American Headache Society or the American Migraine Foundation. 

Pediatric vs. Adult Differences

Headaches in children with hydrocephalus may present differently from those in adults. Pediatric patients often experience more frequent shunt revisions as they grow, which can contribute to recurring headaches. In contrast, adults with hydrocephalus may experience chronic headaches due to long-term shunt use or the buildup of scar tissue from previous surgeries. The natural aging process in adults may also complicate headache management. Additionally, adults may encounter different challenges in managing headaches, as shunts are sometimes revised less frequently later in life, leading to subtle or recurring symptoms, including headaches.

Managing Headaches

Treating headaches in individuals with hydrocephalus often involves diagnosing the underlying cause, which can be challenging. Here are common strategies:

Shunt Adjustments: Shunts that are adjustable can be changed  to drain more or less CSF and see if that can help alleviate headaches caused by pressure issues.

ICP Monitoring: In cases where the cause of headaches is unclear, intracranial pressure monitoring may be used to track pressure changes over time and assess whether shunt revision or valve adjustments are necessary.

Surgical Intervention: If shunt malfunction is confirmed, surgery may be required to replace or repair the shunt, which often resolves headaches.

Medication: If the headaches are not related to shunt malfunction, they may be managed with pain relief medications or treatments commonly used for migraines, such as anti-inflammatory drugs, triptans, or preventive medications like beta-blockers or anticonvulsants.

Non-Pharmacological Approaches: For headaches not related to the shunt, many individuals find relief through lifestyle adjustments such as improving sleep hygiene, staying hydrated, or practicing relaxation techniques like yoga, meditation, or mindfulness exercises. In some cases, physical therapy or massage therapy can help alleviate headaches caused by muscle tension or issues in the neck, particularly for those who experience cervicogenic headaches or tension headaches.

Preventative Care and Monitoring

Regular follow-up appointments with a neurosurgeon or neurologist are crucial for individuals with hydrocephalus, especially those with shunts. Monitoring shunt function and overall neurological health can help prevent complications before they lead to severe headaches or other symptoms. Early intervention and regular check-ups are key in maintaining quality of life for those with hydrocephalus.

The Role of the Multidisciplinary Care Team

Headaches in hydrocephalus can be complex and may require input from a variety of specialists, including neurosurgeons, neurologists, pain management doctors, physical therapists, and even psychologists. Working with a multidisciplinary care team allows for a comprehensive treatment plan that addresses all aspects of the condition, improving overall care and symptom management.

When to Seek Medical Attention

It’s crucial to seek medical attention if you or a loved one with hydrocephalus experiences sudden, severe headaches, especially if they are accompanied by symptoms like vomiting, vision changes, balance issues, or confusion. These symptoms could indicate shunt malfunction or an increase in intracranial pressure, which may require immediate intervention.

For more information on the signs and symptoms of a shunt malfunction, click here.

Next Steps

If you or a loved one with hydrocephalus experiences persistent or severe headaches, consider taking the following steps:

1. Track Symptoms – Keep a headache diary noting frequency, severity, triggers, and any changes in symptoms. Consider using HydroAssist®, the Hydrocephalus Association’s mobile app, to record and store your hydrocephalus treatment and track headaches and other symptoms over time. This data can help identify patterns and assist your healthcare provider in diagnosing the cause.
2. Consult Your Healthcare Provider – Work with a neurologist or neurosurgeon to determine whether the headaches are related to hydrocephalus, a shunt issue, or another cause and the best course of treatment.
3. Explore Treatment Options – Depending on the cause, treatment may include shunt adjustments, medication, lifestyle modifications, or physical therapy. Discuss all available options with your medical team.
4. Consider Non-Medical Approaches – Stress management, hydration, sleep hygiene, and relaxation techniques such as meditation or yoga may help manage headaches that are not directly related to shunt function.
5. Seek Support – Connecting with support groups or online communities can provide valuable insight and emotional support from others experiencing similar challenges.

By staying informed and working closely with your healthcare team, you can take proactive steps to manage headaches and improve your overall well-being. For more information on headache management, visit our article, Guide to Managing Headaches, Chronic Pain, and Hydrocephalus.

Final Thoughts on Managing Headaches in Hydrocephalus

Headaches are a common experience for individuals with hydrocephalus, but not all headaches are related to shunt issues or changes in intracranial pressure. Collaborating with a healthcare provider to determine the cause and develop a treatment plan is essential for managing symptoms and improving quality of life. Whether through shunt adjustments, medication, or lifestyle changes, there are many ways to address headaches in people with hydrocephalus.

Resources

1. American Headache Society (AHS): professional society of healthcare providers dedicated to the study and treatment of headache and face pain. AHS aims to improve the lives of people impacted by migraine and other headache disorders through scientific research and education.
2. American Migraine Foundation (AMF): nonprofit organization focused on promoting research, advocacy, and awareness for the millions of Americans living with migraine. AMF provides education, support, and resources for patients and healthcare professionals.
3. National Headache Foundation (NHF): rovides information on certified headache healthcare practitioners and offers resources to help patients manage headache disorders. NHF aims to raise awareness and support research for headache conditions.
4. International Headache Society (IHS): global organization for those with a professional commitment to helping people affected by headache disorders and facial pains. IHS promotes the exchange of information and ideas concerning the causes and treatments of headache and related painful disorders.
5. Association of Migraine Disorders (AMD): trives to expand the understanding of migraine by supporting research, education, and awareness. AMD offers resources for patients and medical professionals, including educational programs and funding for research initiatives.
6. Coalition for Headache and Migraine Patients (CHAMP): omprised of multiple patient advocacy organizations and leaders in the area of headache and migraine disease. CHAMP aims to improve the lives of people with migraine, cluster, and other headache diseases by aligning coalition participants and empowering patient voices.
7. Migraine World Summit: is an annual virtual event that brings together leading experts in migraine and headache research, treatment, and advocacy.

Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025. We would like to thank Bruce A. Kaufman, MD for his 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.