Patient Stories

See Dr. Vincent Martin of the National Headache Foundation (NHF) interview Carol about her spontaneous spinal CSF leak, which causes intracranial hypotension, or low CSF volume in the head. Please visit the NHF website for a wealth of resources. Shared here with permission.

Watch Lori’s story of her spontaneous spinal CSF leaking related to Ehlers Danlos Syndrome.

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Audrey shares her story of her spinal CSF leak from a labor epidural gone wrong.

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POTS, positional orthostatic tachycardia syndrome, is a type of autonomic dysfunction in which patients experience symptoms and signs with upright posture. Spinal CSF leak also causes symptoms and signs that are worse with upright posture. It should be no surprise that these two diagnoses can be confused. To complicate matters further, both disorders can coexist in the same patient at the same time. A patient with POTS that develops a spinal CSF leak will often experience a worsening of their POTS symptoms.
Watch this video of Kristen with Dr. Ian Carroll explain her experience with being treated for POTS, then her spinal CSF leak finally being diagnosed and treated. Shared here with permission.