Objective:

To assess the impact of spontaneous intracranial hypotension (SIH) on quality-of-life (QoL).

Background:

SIH is a debilitating condition that typically produces orthostatic headache and limits upright time. It is often difficult to detect, diagnose, and treat, profoundly affecting patients’ QoL. 

Design/Methods:

We conducted a cross-sectional survey of patients with confirmed (n=59) and clinically suspected (n=36) SIH evaluated from 2016 to 2022.  Participants completed the following validated measurements online (REDCap V 11.2.2): SF-36 (general well-being), PHQ-9 (depression), GAD-7 (anxiety), FACIT-Sp-12 (spiritual well-being), and HIT-6 (headache impact).  Subsequently, willing participants were interviewed to administer the Columbia-Suicide Severity Rating Scale (C-SSRS) assessing suicidal behavior and ideation.  

Results:

95 of 234 patients (41%) meeting inclusion criteria completed the questionnaires.  The average age was 51.1 years (SD: 15.5), predominantly female (69.5%), Caucasian (91.6%), and married (69.5%).  74.5% scored within the most severe headache category on the HIT-6. SF-36 scores were significantly worse (p < 0.0001) compared to the general population.  49.1% scored in the moderate or worse depression range (>10) and 25.4% scored for moderate or worse anxiety (>10). FACIT scores strongly correlated (p<0.001) with HIT-6 (-.54), SF-36 Mental Component (r=.66), PHQ-9 (r=-.65) and GAD-7 (r=-.65).  67 respondents completed the C-SSRS of whom 64.2% had endorsed a wish to be dead, and 22.4% had demonstrated suicidal behavior.  Symptom-free SIH patients (n = 22) scored significantly better than symptomatic patients and similar to the general population.  

Conclusions:

SIH is associated with severe headache pain and high rates of depression, anxiety, and disability, affecting basic activities of daily living.  Individuals with confirmed and suspected SIH had similar levels of head pain, depression, anxiety and suicidality in our cohort.  Symptom-free individuals following successful treatment or spontaneous remission showed improved outcomes comparable to the general population.  Improved identification and treatment of SIH are imperative to improving patients’ QoL.