Symptoms

CSF leaks, which normally lead to Intracranial Hypotension (loss of CSF pressure and volume in the cranium), can result in a wide range of symptoms; some are primary symptoms, some secondary. Many of the symptoms can be debilitating and have a significant impact on the sufferer’s quality of life and ability to work.

Typically, a variety of symptoms will be experienced by suffers and few people will experience identical symptoms. It is rare that only one symptom will be present, although not unheard of. There can be a slight difference between the range, combination and severity of symptoms experienced by spinal and cranial leakers.

Head

  • Headaches (frontal, parietal and occipital)
  • Heaviness of head
  • Feeling of pressure within the head
  • Sensitivity of, or tingling sensations within, the scalp

Ears/Hearing

  • Tinnitus (ranging from ringing and buzzing to pulsatile tinnitus)
  • Pressure sensations in the ears/ear popping
  • Feeling of liquid in the ears
  • Hearing loss (sometimes similar to Meniere’s disease) and dulled hearing

Eyes/Vision

  • Blurry vision
  • Double vision
  • Pain behind eyes
  • Pain when moving eyes

Facial

  • Facial numbness
  • Sinus pressure
  • Jaw pain/tooth ache
  • Temporomandibular joint pain and stiffness

Back, Neck & Limbs

  • Neck pain and stiffness
  • Back pain (area-specific and general)
  • Tingling sensations and spams in the spine, back, arms and sometimes legs

Other Symptoms

  • Rapid heartbeat, particularly when sitting or standing
  • Nausea and, in extreme cases, sickness
  • Cognitive decline (including memory loss and loss of concentration)

 Cranial Leak-specific

  • Fluid discharge from ears, nose and to back of throat
  • Recurring or chronic meningitis

A key characteristic of most of the above symptoms is that they are generally orthostatic. That is to say that they occur principally when standing, but are significantly relieved, sometimes even relieved in their entirely, when lying down.

Symptoms may present themselves immediately upon sitting or standing, or increase gradually over a period of time. A common pattern with many CSF leak sufferers, particularly those with a small or intermittent leak, is that symptoms may only become noticeable or severe later in the day.

Many CSF leak symptoms are common characteristics of other headache disorders, such as migraine, acute sinusitis, severe tension headache and post-traumatic headache. Research shows that these similarities routinely result in the misdiagnosis of a CSF leak.

The orthostatic characteristic is, however, a key indicator of a CSF leak and whenever this is present, a CSF leak should not be ruled out. Due to the perceived rarity of this condition and the lack of diagnosis experience in GP surgeries and A&E wards, it may be necessary for those experiencing CSF leak symptoms to specifically raise it as a possibility with their GP or emergency medicine practitioner.