Pursuing the impact of headaches in patients with idiopathic intracranial hypertension: a prospective cohort study

Persistent headaches have been reported in a significant percentage of patients with idiopathic intracranial hypertension (IIH). This study aimed to evaluate possible factors underlying post-IIH headache. IIH patients were evaluated for demographic and clinical features, along with the Headache Impact Test (HIT-6) and Migraine Disability Assessment Scale (MIDAS) questionnaires to assess headache-related impact and disability. Features noted at the initial visit were compared with those at follow-up after resolution of papilledema. Of the 91 patients included, 92.3% reported headaches at the initial visit, with 73.8% having headaches consistent with migraine. After resolution of papilledema, 54.9% continued to report headaches. Median HIT-6 and MIDAS scores at follow-up were significantly lower than at the first visit (<i>p</i> &lt; 0.001 for both). On univariate regression analysis, none of the demographic or clinical features investigated, including CSF opening pressure, were associated with post-resolution headaches (<i>p</i> &gt; 0.05). Higher HIT-6 and MIDAS scores at the first visit were associated with higher scores at follow-up (<i>p</i> &lt; 0.05). Cerebrospinal fluid opening pressure was not linked to the presence or impact of post-resolution headaches (<i>p</i> &gt; 0.05). Prior to IIH, 73.6% of patients reported headaches, with 73.1% of these consistent with migraine. Prior migraine was associated with higher HIT-6 and MIDAS scores at the initial visit (<i>p</i> = 0.02 and <i>p</i> &lt; 0.001, respectively). Migraine headaches before IIH diagnosis are associated with more severe and disabling headaches initially. Higher initial HIT-6 or MIDAS scores predict increased disability post-resolution. Headache-specific treatments should be further explored in patients with IIH.