CSF leak

Upright headache, orthostatic headache, spinal CSF leak, post lumbar puncture headache, spontaneous intracranial hypotension, spontaneous CSF leak, low intracranial pressure, cranial CSF leak, brain sag, brain slump, CSFVF, CSF venous fistula

What is CSF leak?

CSF stands for cerebrospinal fluid, a clear fluid which surrounds the brain and flows around the spine in the dura mater, the outer membrane surrounding the spinal cord and brain.

CSF makes the brain buoyant, allowing it to float in the skull without any pressure, and acts as a ‘shock absorber’ for the brain and spinal cord.

A CSF leak is an under-diagnosed, yet often debilitating, condition where there is a small tear, hole or defect in the dura mater, allowing the CSF to leak out.

What causes CSF leaks?

There are many reasons why people can develop CSF leaks. Some include:

  • Trauma and injuries to the head and spine
  • Whiplash
  • Following a lumbar puncture or epidural injection
  • Following nasal, spinal or cranial surgery
  • Spontaneous leaks (more likely in patients with connective tissue and hypermobility disorders, such as Ehlers Danlos Syndrome)
  • The overdraining of a shut, which may be in place for people with conditions like hydrocephalus or Idiopathic intracranial hypertension (IIH)
  • A CSF venous fistula, where CSF from within the dura drains into a vein

What are the symptoms of a CSF leak?

When the CSF leaks out, the overall pressure inside the skull drops. This is known as Spontaneous Intracranial Hypotension (SIH).

When CSF is lost, its cushioning effect is reduced and the brain slumps or sags downwards. This can produce a wide range of symptoms, including:

  • Severe pain and headaches
  • A feeling of pressure
  • Tinnitus
  • Blurred vision
  • Neck pain
  • Shoulder pain
  • Dizziness and/or feelings of disequilibrium
  • Nausea
  • Vomiting
  • Spasms
  • Cognitive impairment (sometimes described as brain fog)
  • Seizures
  • In rare cases, coma and death

Symptoms are usually remarkably worse when standing or sitting upright, and lessen or disappear when lying flat.

Are you affected by a CSF leak?

If you’re affected by a CSF leak, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with a CSF leak, emotional support such as counselling, phone befriending and group therapy and social activities to people with CSF leaks from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0800 008 6417

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with a CSF leak

We support carers, friends and family too

Are you a carer for or relative of someone with a CSF leak? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including CSF leak, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The Brain Charity’s free public library has a range of resources on CSF leaks

Visit our library to read Nerve Pain by K. Croom, or search the online catalogue here.

Support groups

CSF Leak Association

The CSF Leak Association can put you in touch with a patient support group. Find out more here.

Support groups at The Brain Charity

Are you interested in setting up a CSF leak support group, or do you already run one? Email info@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

CSF Leak Association

Website: csfleak.uk

Email: Use the form here.