Background There have been no previous studies assessing quality of life (QOL) in idiopathic intracranial hypertension (IIH). Our previously published prospective cohort study confirmed that weight loss, significantly reduced intracranial pressure (ICP) and treated chronic active IIH.

Method We assessed QOL using the short form 36 questionnaires (SF-36) before and after a period of weight loss induced through a low calorie diet and compared to changes in clinical outcomes. Baseline QOL was compared to obese, age matched control data.

Results At baseline, SF-36 scores were worse in the IIH group compared to an age-matched population. Weight loss and reduction of ICP lead to a significant reduction in 8 out of 11 domains of the SF-36. The improvement in SF-36 correlated significantly with headache recovery (severity and disability measured using the headache impact test-6), p<0.0001, but not reduction in ICP, papilloedema (measured by optical coherence tomography), perimetry (Humphrey visual field 24–2), LogMar visual acuity or body mass index.

Conclusion We demonstrate a significant improvement in QOL in IIH following therapeutic weight loss and reduction in ICP. Improvement in headache was associated with enhanced QOL. We suggest that effective headache treatment will improve QOL in patients with IIH.