Name  Cerebrospinal Fluid (CSF) Leak
Related to/Also known as 

Low-pressure headache
Intracranial hypotension

May sometimes be caused by Spinal Injury, Brain Injury, or Subarachnoid Haemorrhage; or may sometimes be caused by medical procedures, such as those relating to Hydrocephalus or Multiple Sclerosis.

Symptoms of CSF Leak

"A cerebrospinal fluid leak occurs when there is a tear or hole in the membranes that surround the brain and spinal cord, and the fluid that surrounds these structures escapes. As a result of this leak, the overall pressure within the skull can drop (which is referred to as intracranial hypotension) and this can cause headaches as well as other neurological symptoms."

Source: The Brain & Spine Foundation
Link opens in new window https://tinyurl.com/ybx6gfjo

" Common symptoms

  • Headache that is worse when upright and better when horizontal (but other patterns do occur)
  • Nausea and vomiting
  • Neck pain or stiffness
  • Change in hearing (muffled, underwater, tinnitus) "

Source: U.S. Spinal CSF Leak Foundation
Link opens in new window https://tinyurl.com/yahpsoyz

  • Spontaneous cerebrospinal fluid leak (SCSFL)
  • Cerebrospinal fluid rhinorrhoea
Useful national contacts

CSF Leak Association
Link opens in new window www.csfleak.info
CSF Leak Association Facebook page:
Link opens in new window https://tinyurl.com/y76eqxdp

Brain & Spine Foundation
Link opens in new window www.brainandspine.org.uk
Helpline freephone 0808 808 1000,
Monday to Thursday, from 9am to 4pm, and Fridays, from 9am to 1pm. Not open on Bank Holidays.

Online resources

Coronavirus (COVID-19) & Cerebrospinal Fluid (CSF) Leaks (CSF Leak Association)
Link opens in new window www.csfleak.info/coronavirus-and-cerebrospinal-fluid-leaks

Who should have the pneumococcal vaccine? (NHS
Link opens in new window www.nhs.uk/conditions/vaccinations/when-is-pneumococcal-vaccine-needed/

Spontaneous Intracranial Hypotension (U.S. National Organization for Rare Disorders)
Link opens in new window https://tinyurl.com/yaev4rqb

CSF Leak: A Curable Cause of Headache (Cedars-Sinai Hospital, U.S.)
Link opens in new window https://tinyurl.com/ybkr3c8a

Spinal CSF Leak Foundation (U.S.)
Link opens in new window http://spinalcsfleak.org

 Living with a condition (The Brain Charity)

News and events "Duncan James: I had spinal fluid coming out of my back and doctors told me I might never walk again" (Daily Mail, August 2016)
Our resources

Headache The library at the Brain Charity has a wide range of resources on disability-related issues. This includes a copy of the Brain & Spine Foundation's booklet on headache.