Upright headache? Think CSF leak!

A cerebrospinal fluid (CSF) leak is a serious and often incapacitating medical condition SPINAL AND CRANIAL CEREBROSPINAL FLUID LEAK
stemming from a tear or hole in the membrane that contains the fluid surrounding the spinal cord • Rarely, pockets of leaked CSF may be visible under the
and brain. It can occur in the head or spine as result of trauma, surgery, an underlying disorder skin, however majority of spinal leaks cannot be
seen externally
or spontaneously. When fluid leaks out, intracranial pressure and CSF volume reduces (known as • Cranial leaks may present as fluid leaking
intracranial hypotension) which allows the brain to sag within the skull. As a result of this ‘brain from nose, ears and drainage to throat.
5. DOUBLE AND BLURRED VISION
sag’, sufferers may experience severe and unrelenting head pain, pressure, visual disturbances,
• Vision can become blurred or
hearing impairment, tinnitus, muscle twitches, spasms and a wide range of other symptoms. 7. double vision may be experienced,
6. EYE PAIN AND often worsening after a period
PHOTOPHOBIA sitting or standing
VERTICAL POSITION • Pain behind eyes • For glasses and contact lense
users, prescription changes my
Intracranial hypotension is responsible for • Pain when moving eyes
occur.
many CSF leak symptoms. It normally has • Sensitivity to bright light
1. a prominent postural element; pain and (photophobia)
other symptoms are worse when upright. • Visual field changes.
Sometimes onset may occur immediately,
but symptoms can build slowly over a
number of hours to become a ‘second
half of day headache’. LEAK FACT BRAIN FOG AND FATIGUE
• Cognitive impairment (including memory loss,
Research shows that at least 8. loss of concentration and/or inability to
HORIZONTAL POSITION 5 in 100,000 people each year are affected maintain train of thought)
• Chronic fatigue, lack of stamina and exhaustion.
Symptoms may be entirely relieved or by spontaneous CSF leaks, with many more
significantly reduced by lying down (often suffering from iatrogenic or traumatic CSF
with head lower than feet).
The postural element may, however,
leaks. They are not rare, yet are generally
reduce over time, and lying down under-diagnosed; misdiagnosis of migraine, 9.
may then provide less relief. sinusitis, NPDH, tension and other headache NAUSEA AND TASTE
disorders is common place, and on • Nausea and vomiting (often
average correct diagnosis takes worse when sitting or standing)
• Changes in taste (sometimes
13 months from onset. metallic or salty)
HEADACHE PRESSURE • Cranial leaks may result in fluid
discharge to throat.
3. AND SENSATIONS 10.
• Pressure feeling within the skull
DIZZINESS AND IMBALANCE AND HEART RATE
• ‘Pulling’ sensation from the head to neck
• Facial numbness, jaw pain and toothache • Dizziness (particularly when upright or changing position)
• ‘Crawling’ or dripping liquid sensations • Sense of imbalance and ataxia (unsteady gait)
around top of head. • Rarely, quadriplegia, parkinsonism
or other movement disorders
• Elevated heart rate and
occasionally shortness
2. 11. of breath.
NECK AND BACK PAIN
• Neck pain, aches and stiffness
HEADACHE AND HEAD PAIN
4. • Interscapular pain (stiffness between
• Often experienced at the front or back of the shoulder blades) Find out more about
head, although can vary a great deal in TINNITUS AND HEARING CHANGES
severity and characteristics
• Generalised back pain (occasionally
at nerve roots) • Tinnitus – high pitched, buzzing and/or pulsatile
cerebrospinal fluid leaks
• It is often worse when sitting or standing and
relieved when lying, but may become less
• Rarely, localised pain at the site of • Ear pressure, popping or feeling of liquid in ears www.csfleak.info/findoutmore
the CSF leak. • Hearing loss and dulled hearing
positional over time. The CSF Leak Association is a Scottish Charitable
• Sensitivity to sound (phonophobia). Incorporated Organisation. Charity No. SC046319
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