How Do I Know If My Headache Is Caused by a Cerebrospinal Fluid (CSF) Leak?

Headaches may occur in more than 90% of people with CSF leaks. The hallmark symptom is an orthostatic headache.

An orthostatic headache is a headache that’s worse when you’re vertical and improves when you’re lying down. It usually occurs or worsens within 15 minutes of standing or sitting upright.

Studies used in a 2023 case report showed that 15% of people develop thunderclap headaches. These headaches occur suddenly within a minute, causing debilitating pain, often described as the “worst headache of my life.”

A CSF leak requires emergency medical attention. Get immediate care if you develop a sudden and severe headache or other potential symptoms such as:

• changes in your vision
• confusion
• weakness

It’s vital to receive medical help if you’ve recently had:

• a head injury
• a spinal tap
• brain surgery

For mild CSF leaks, your doctor may recommend:

• getting complete bed rest
• taking ibuprofen (Advil) and acetaminophen (Tylenol) for headache and neck pain
• drinking plenty of hydrating fluids
• avoiding activities that increase pressure in your head
• increasing caffeine and salt intake slightly

More severe leaks may need:

• surgery, which has high rates of success
• blood patch injections
• antibiotics or other medications

If your doctor suspects a CSF leak, they can have you get imaging such as:

• MRI
• CT scan
• CT cisternography
• myelogram

Your brain usually weighs about 1,500 grams (3.3 pounds), but suspending it in CSF reduces its weight to about 48 grams (0.1 pounds). When you lose CSF due to a leakage, your brain can sag inside your skull. This sagging may lead to puling against the sensory nerves in your meninges and veins, which can cause headache pain.

CSF leak headaches often worsen when standing upright due to increased pulling against your meninges. Pain is usually relieved by lying down since there’s less pulling against your meninges and less swelling of your brain’s sinuses.

Your brain usually compensates for low CSF pressure by expanding the blood vessels inside your brain. This process can also cause headaches due to increasing brain volume.

Other common symptoms of a CSF leak include:

• clear nasal drip
• nausea
• neck pain and stiffness
• ringing in your ears
• loss of smell
• loss of taste

The outlook for a CSF leak is usually good when you manage the leak properly — success rates of initial endoscopic surgery range from 87–100%. Many people can resolve their symptoms without surgery.

How long can a CSF leak go untreated?

The average time from first symptoms to diagnosis of a cerebrospinal fluid leak is 2 1/2 months. This condition can be challenging to diagnose, and people may live with symptoms for a long time before they receive accurate diagnoses and appropriate treatments.

Some cerebrospinal fluid leaks resolve within a few days, even without surgery. However, getting medical attention for a proper evaluation is still essential if you suspect you might have a CSF leak.

How do you check for a CSF leak at home?

You can’t diagnose a CSF leak at home. Get immediate medical attention if you have potential symptoms, such as a headache that worsens when you stand up and improves when you lie down.

Should I go to the ER for a CSF leak?

Most CSF leaks are treatable. But go to the emergency room (ER) for proper evaluation and management if you have possible symptoms.

Headaches are one of the most common symptoms of CSF leaks. They may occur due to irritation of the nerves in your meninges.

Getting immediate medical attention is essential if you think you may have symptoms of a CSF leak. Although they’re almost always successfully treatable, they still require a prompt diagnosis to avoid complications like meningitis.