Objective:

To evaluate the reasons for discontinuing medical management in patients with refractory idiopathic intracranial hypertension (IIH).

Background:

Commonly employed medical management for IIH includes diuretics, anti-epileptics, and others. However, a large subset of IIH patients may experience intolerance or resistance to medical management, leading to low efficacy and quality of life.

Design/Methods:

This is a retrospective chart review of medically refractory IIH patients with no relevant brain or spine surgical and no secondary etiology, who underwent venous manometry at Thomas Jefferson University Hospital between 1/2022 and 10/2023. History of medical management, including current and past medications, doses, and reasons for discontinuation and medication changes were collected in addition to demographic data.

Results:

The study included 48 female patients (22 Caucasians, and 21 African Americans) with a mean age of 38.9±9.9 years and a BMI of 36.8 ± 9.1 kg/m2. Commonly used preventive medications in this cohort, included 43 (89.5%) acetazolamide, 29 (60.4%) topiramate, 11 (22.9%) onabotulinumtoxinA, 9 (18.8%) rimegepant, 8 (16.7%) galcanezumab, 5 (10.4%) erenumab, 2 (4.1%) eptinezumab, and 2 (4.1%) fremanezumab. The pre-intervention mean dose of acetazolamide and topiramate was 962.5 ± 425 mg and 140  ± 102mg per day, respectively. 23 (53.4%) and 20 (68.9%) of acetazolamide and topiramate were discontinued. The main reasons for discontinuation of acetazolamide vs topiramate included adverse effects (17 [73.9%] vs. 17 [85.0%]), inadequate response (6 [26.1%] vs. 1 [5.0%]), and reasons unspecified (6 [26.1%] vs. 5 [25.0%]). One patient also developed a sickle cell crisis on acetazolamide.

Conclusions:

Our study results suggest that medical management available for IIH may not be suitable for all patients, and many may discontinue the medication due to adverse effects or no improvement in symptoms. IIH patients refractory to medical management are a challenging sub-group requiring invasive and surgical diagnostic and treatment modalities.