Associated Conditions - Organisation Links
POTS Foundation Australia
One of the hallmark symptoms of a spinal cerebrospinal fluid (CSF) leak is orthostatic head pain—headaches that intensify when standing and ease when lying down. However, not all patients with a spinal CSF leak experience orthostatic symptoms or head pain, and not all cases of orthostatic intolerance or head pain are caused by a spinal CSF leak. In some instances, a patient with a spinal CSF leak may also have orthostatic intolerance from an unrelated dysautonomic condition such as POTS, meaning both issues can coexist.
The Ehlers-Danlos Society
Spinal CSF leak can be linked to certain risk factors, such as connective tissue disorders like Ehlers-Danlos syndrome. However, it can also happen in people without these conditions, and in many cases the exact cause is unknown.
Connective Tissue Disorders Network Australia (CTDNA)
CTDNA is the national voice, and peak body for people affected by heritable connective tissue disorders (HCTDs), driving advocacy, education, and collaboration.