Abstract

Recent studies have yielded the first evidence-based treatments for idiopathic intracranial hypertension (IIH) and shed light on many aspects of this condition, providing an opportunity to streamline the assessment and management of patients with IIH.

This study highlighted the inefficiency of most patient pathways, especially when via outpatients, with resulting delays in diagnosis and /or management. Of note, 37% of patients did not have venography. Up to a third of patients with cerebral venous sinus thrombosis present with isolated signs of elevated intracranial pressure, thus clinically mimicking IIH and emphasising the importance of venography acutely.

Acetazolamide was appropriately commenced but rarely titrated to the maximum dose of 4 g/day as supported by the IIHTT. Over 40% of our cohort had a diagnosable co-morbid primary headache disorder which persisted and required additional headache-specific medication in almost half of these. This is in keeping with studies showing that headache is unrelated to raised intracranial pressure in IIH patients, and headache-specific management is a key aspect to the management of IIH patients.

In summary, this study highlights significant delays and missed investigations when not performed acutely, emphasising the importance of implementing a clear and visible pathway for the assessment and management of IIH patients.