Spinal CSF Leak and Dysautonomia

October 1, 2023News

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Dysautonomia awareness month

October is Dysautonomia Awareness Month. Dysautonomia (from “dys-,” meaning bad or difficult, and “autonomic,” meaning occurring involuntarily or automatically) is the name for range of conditions that affect the autonomic nervous system, the “control system” that regulates heart rate, digestion, respiratory rate, blood pressure, and more. It’s estimated that more than 70 million people around the world are affected by dysautonomia.

Postural Orthostatic Tachycardia Syndrome, or POTS, is a type of dysautonomia that causes a rise in heart rate, among other symptoms, when people stand up. For some people with POTS, this includes having head pain when upright. This inability to tolerate being upright is called “orthostatic intolerance” (orthostatic literally means “relating to or caused by an upright posture”).

Dysautonomia and spinal CSF leak

One of the most common symptoms of spinal cerebrospinal fluid (CSF) leak is orthostatic head pain—head pain that worsens upon standing and improves when lying down. But not every patient with a spinal leak has orthostatic intolerance (or head pain), and not every patient with orthostatic intolerance (or head pain) has a spinal CSF leak—and sometimes patients with spinal CSF leak can have both a spinal leak AND orthostatic intolerance due to a separate dysautonomic disorder like POTS.

This is one of the many reasons why spinal CSF leak can be so challenging to diagnose. And since there is such overlap in symptoms between spinal CSF leak and dysautonomic conditions, it’s important to consider the possibility of an underlying cause of spinal CSF leak in patients who meet the criteria for POTS. [See this 2018 study on the overlap between SIH and POTS.]

Further reading

For more information on dysautonomia and POTS, visit Dysautonomia International.

For more information on the diagnostic challenges of spinal CSF leak, and other neurological symptoms and complications, please see the following articles:

POTS, spinal CSF leak or BOTH?

Diagnostic challenges in spontaneous intracranial hypotension