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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 (NDPH).

Other Possible Signs and Symptoms

Symptoms do not always appear simultaneously or in any particular order

  • 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)

  • Neck stiffness or pain

  • Vertigo and dizziness

  • Brain fogginess– feeling disconnected

  • Photophobia (sensitivity to light)

  • Phonophobia (sensitivity to sound)

  • Metallic taste 

  • Pain between shoulder blades

  • Facial pain or numbness 

  • Visual changes (blurring, double vision)

  • Trouble with balance and walking

  • Motion sickness

  • Cognitive impairment: memory loss, concentration issues

Complications

In extreme cases, complications from the condition can lead to:

  • Acute quadriplegia

  • Ataxia (unsteady gait)

  • Behavioural variant frontotemporal dementia (bvFTD)

  • Bibrachial amyotrophy

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

  • Chronic cerebellar haemorhage

  • Chronic Subdural hematoma (bleeding just under the dural membrane)

  • Death

  • Dementia

  • Parkinsonism (being stiff and slow)

  • Posterior reversible encephalopathy syndrome (PRES) – another rare condition that is associated with very high blood pressures and neurological symptoms

  • Reversible cerebral vasoconstriction syndrome (RCVS) – a rare condition that causes temporary constriction of blood vessels

  • Spinal cord herniation

  • Subarachnoid hemorrhage

  • Superficial siderosis (SS)

  • Stroke

  • Stupor / coma

  • Other movement disorders

  • Weakness of arms and/or legs

Key Notes

“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.

Sources & Suggested Reading