Aims and methodsPatients with idiopathic intracranial hypertension (IIH) often report significant morbidity associated with lumbar punctures. We therefore aimed to assess the patient’s experience of diagnostic lumbar puncture (LP) in IIH using an online survey designed in collaboration with IIH: UK (a leading UK charity).Results463 patients responded to the survey, and were eligible for analysis, over a 2 month period in 2015. 40% of patients described severe pain during the LP (VRS≥8), and the median pain score during the LP was 7 (VRS, IQR 5–7). The majority of patients felt they received insufficient pain relief (85%). Levels of anxiety about future LP’s were high (median VRS 7, IQR 4–10), with 47% being extremely anxious (VRS≥8). LPs performed as an emergency were associated with significantly greater pain scores compared to elective procedures (median 7, IQR 5–7 vs 6, IQR 4–8, p=0.012). Higher LP pain scores (VRS) were significantly associated with poorly informed patients (Spearman correlation, r=−0.32, p<0.001).ConclusionsThis study has shown that a significant number of these patients are experiencing significant morbidity from pain and anxiety. This morbidity is associated with both inadequate pre-procedural information, as well as the setting the LP is performed in.