Background and Objectives:
Spontaneous intracranial hypotension (SIH) is a debilitating condition typically producing orthostatic headache limiting upright time. SIH is often difficult to diagnose and treat, negatively affecting quality-of-life (QoL) in patients with the disorder. We studied QOL in confirmed and suspected SIH patients using standardized instruments, including suicidality.
Methods:
We performed a cross-sectional survey of adult patients with confirmed and clinically suspected SIH evaluated in our Headache and Facial Pain Program from 2016 to 2022. Using an online data collection tool (REDCap V 11.2.2), participants completed validated questionnaires assessing general well-being (SF-36), depression (PHQ-9), general anxiety disorder-7 (GAD-7), spiritual well-being during chronic therapy (FACIT-Sp-12) and headache impact (HIT-6). Subsequently, we interviewed willing participants to administer the Columbia-Suicide Severity Rating Scale (C-SSRS) assessing suicidal behavior and ideation.
Results:
234 patients met inclusion criteria and were invited to participate in the study and 95 (59 confirmed and 36 clinically suspected) completed the questionnaires. The cohort’s average age was 51.1 years (SD: 15.5), predominantly female (69.5%), White (91.6%), and married (69.5%). Three-quarters (74.5%) scored within the most severe headache category (HIT-6). SF-36 scores were significantly inferior (p < .0001) to the general population, and lower than reported values for patients with multiple sclerosis and idiopathic intracranial hypertension. Almost half (49.1%) of respondents scored in the moderate depression range or worse (>10) and 25.4% scored with moderate anxiety or worse (>10). FACIT-Sp-12 scores were significantly worse (p < 0.0001) in symptomatic participants than in the validation cohorts of AIDS and cancer patients. Of the 67 respondents who completed the C-SSRS, over half (64.2%) 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, comparable to the general population.
Conclusion:
Based on our single-center cohort, 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 spinal CSF leaks scored similarly on these measures including suicidality. Outcomes were comparable to the general population following successful treatment or spontaneous remission. Improved identification and treatment of SIH are imperative to improve patients’ QoL.