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Signs and symptoms

Reviewed by Dr. Farnaz Amoozegar, MD, MSc, FRCPC

Page last updated: May 2026

 
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One of the most common symptoms of a spinal CSF leak is a moderate to severe orthostatic headache. This means that the patient feels partial or complete relief of the headache when lying down flat, and the patient’s headache worsens considerably when upright.

On occasion, the headache, especially with chronic spinal CSF leak may not be orthostatic.  Sometimes, the headache starts over the course of hours to days and just does not go away.  This is called a New Daily Persistent Headache (NDPH).  Sometimes it will be noticeable with bending, coughing, sneezing, exercise or straining.

Other Possible Signs and Symptoms

Symptoms do not always appear simultaneously or in any particular order. Not all of these symptoms need to be present in a patient to diagnose a spinal CSF leak.

●      Head pressure

●      A feeling of a grabbing sensation in the back of the head

●      Extreme fatigue

●      Nausea and vomiting

●      Hearing abnormalities (fan-like sound, muffled hearing, ear fullness, plugged ears, tinnitus, ear “popping”)

●      Neck stiffness or pain

●      Vertigo and dizziness

●      Photophobia (sensitivity to light)

●      Phonophobia (sensitivity to sound)

●      Metallic taste

●      Pain between shoulder blades

●      Facial pain or numbness

●      Visual changes (blurred or double vision)

●      Trouble with balance and walking

●      Motion sickness

●      Cognitive impairment: (ranging from memory loss, concentration issues, “brain fog”-feeling disconnected)

 

Some Rare Presentations & Long-term Complications

In rare cases, spinal CSF leak can lead to:

●      Elevated prolactin and galactorrhea (from traction on the pituitary stalk)

●      Ataxia (unsteady gait)

●      Dysarthria (difficulty speaking)

●      Dementia

●      Dysphagia (difficulty swallowing)

●      Weakness of arms and/or legs

●      Movement disorders (ataxia, bradykinesia, gait disturbance, hemifacial spasm, Parkinsonism, tremor)

●      Acute quadriplegia

●      Dementia (Behavioural variant frontotemporal dementia (bvFTD))

●      Bibrachial amyotrophy

●      Cerebral vein thrombosis (blood clot within the veins around the brain)

●      Chronic cerebellar hemorrhage

●      Chronic subdural hematoma (bleeding just under the dural membrane)

●      Death

●      Spinal cord herniation

●      Spinal adhesive arachnoiditis

●      Syringomyelia

●      Stroke

●      Stupor / coma

●      Superficial siderosis (SS)

Key Notes

  • In some cases, the positional aspect of the headache can fade away with time or may not be very obvious to some patients.

  • In some cases, it can take hours for the symptoms to be alleviated once lying down.

  • Some patients with spinal CSF leak experience what is known as ‘end of the day or second half of the day headaches, after hours of being upright.

  • Coughing, sneezing, laughing, bending, and crying (known as Valsalva activities) can worsen the symptoms.

  • Spinal CSF leak can cause serious complications, some of which may be reversible with appropriate treatment.

References and suggested readings: