Signs and symptoms
One of the most common symptoms of a spinal CSF leak is a positional/orthostatic headache. This means that the patient feels partial or complete relief of the headache when he or she lies down and the patient’s headache worsens considerably when the patient is upright.
On occasion, the headache may not be orthostatic. Sometimes, it just starts over the course of hours to days and just does not go away. This is called a New Daily Persistent Headache.
Other Possible Signs and Symptoms
Symptoms do not always appear simultaneously or in any particular order
A feeling of a grabbing sensation in the back of the head
Nausea and vomiting
Hearing abnormalities (fan-like sound, muffled hearing, ear fullness, plugged ears, tinnitus)
Neck stiffness or pain
Vertigo and dizziness
Brain fogginess– feeling disconnected
Photophobia (sensitivity to light)
Phonophobia (sensitivity to sound)
Pain between shoulder blades
Facial pain or numbness
Visual changes (blurring, double vision)
Trouble with balance and walking
Cognitive impairment: memory loss, concentration issues
In extreme cases, complications from the condition can lead to:
Parkinsonism (being stiff and slow)
Other movement disorders
Weakness of arms and/or legs
Ataxia (unsteady gait)
Stupor / coma
Subdural hematoma (bleeding just under the dural membrane)
Cerebral venous thrombosis (blood clot within the veins around the brain)
Reversible cerebral vasoconstriction syndrome (RCVS) – a rare condition that causes temporary constriction of blood vessels
Posterior reversible encephalopathy syndrome (PRES) – another rare condition that is associated with very high blood pressures and neurological symptoms
“The headache feels like a brick is pushing my brain down to my throat” - Anonymous CSF leaker.
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 CSF leaks 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, crying (known as valsalva activities) can worsen the symptoms.