Long term outcomes of idiopathic intracranial hypertension: Observational study and literature review.

BACKGROUND

Idiopathic intracranial hypertension (IIH) is an unexplained increase in intracranial pressure often associated with obesity. The aim of this study was to conduct a retrospective observational study of the long term clinical, visual, and treatment outcomes in IIH patients.

METHODS

A retrospective observational study of patients diagnosed with IIH over a 12-year period at a single centre was completed via database review. Demographic data, symptoms at baseline and last visit, treatments undertaken, and duration of follow-up were included. Visual outcomes, including visual acuity, colour vision, 30-2 Humphrey automated perimetry data, and retinal nerve fibre layer thickness (RNFL), were collected at baseline and last visit.

RESULTS

IIH was diagnosed in 132 patients (90.9 % female) with a median of 2.8 years (range: 0-9.1) follow-up. Mean BMI was 35.9 ± 7.9 kg/m2. Symptoms at presentation were headache (87.6 %), pulsatile tinnitus (27.2 %) and transient visual obscurations (27.2 %). First-line management was acetazolamide in 86.4 %, with 34.2 % of these patients ceasing treatment because of adverse events. Visual field measures and RNFL at last follow-up improved when compared to baseline (median MD: - 1.99 dB (IQR -3.6 to -0.9) to -0.85 (-2.1 to 0.0) (p < 0.001), median RNFL: 132 μm (IQR 116 - 183) to 103 (92 - 113) (p < 0.001)). Some patients (6.1 %) required surgery for more severe IIH.

CONCLUSIONS

Long-term symptomatic and visual prognosis in IIH patients is excellent. However, a subset of patients with more severe disease require surgical intervention. Adverse events of treatment lead to high medication discontinuation rates.