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 patients with confirmed and suspected SIH using standardized instruments, including suicidality.

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), generalized anxiety disorder-7 (GAD-7), spiritual well-being during chronic illness 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.

A total of 234 patients met inclusion criteria and were invited to participate in the study, and 95 patients (59 confirmed and 36 clinically suspected) completed the questionnaires. The average age of the cohort 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 < 0.0001) 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 patients with AIDS and cancer. Of the 67 respondents who completed the C-SSRS, more than half (64.2%) endorsed a wish to be dead, and 22.4% had demonstrated suicidal behavior. Patients with symptom-free SIH (n = 22) scored significantly better than symptomatic patients, comparable with the general population.

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 with the general population after successful treatment or spontaneous remission. Improved identification and treatment of SIH are imperative to improve patients' QoL.

自发性颅内低血压 (SIH) 是一种使人衰弱的疾病，通常会产生直立性头痛，限制直立时间。SIH 通常难以诊断和治疗，会对患者的生活质量 (QoL) 产生负面影响。我们使用标准化工具研究了确诊和疑似 SIH 患者的生活质量，包括自杀倾向。

我们对 2016 年至 2022 年在我们的头痛和面部疼痛项目中评估的确诊和临床疑似 SIH 的成年患者进行了横断面调查。使用在线数据收集工具 (REDCap V 11.2.2)，参与者完成了经过验证的问卷，评估总体健康状况- 幸福感 (SF-36)、抑郁症 (PHQ-9)、广泛性焦虑症 7 (GAD-7)、慢性病治疗期间的精神健康 (FACIT-Sp-12) 和头痛影响 (HIT-6) 。随后，我们采访了愿意使用哥伦比亚自杀严重程度评定量表（C-SSRS）的参与者，以评估自杀行为和意念。

共有 234 名患者符合纳入标准并被邀请参加该研究，其中 95 名患者（59 名确诊患者和 36 名临床疑似患者）完成了调查问卷。该队列的平均年龄为 51.1 岁（SD：15.5），主要是女性（69.5%）、白人（91.6%）和已婚（69.5%）。四分之三 (74.5%) 的得分属于最严重的头痛类别 (HIT-6)。SF-36 评分显着低于一般人群( p < 0.0001)，并且低于多发性硬化症和特发性颅内高压患者的报告值。近一半（49.1%）的受访者得分为中度抑郁或更严重（>10），25.4%的受访者得分为中度焦虑或更严重（>10）。有症状参与者的FACIT-Sp-12 评分显着低于艾滋病和癌症患者的验证队列（ p < 0.0001）。在完成 C-SSRS 的 67 名受访者中，超过一半 (64.2%) 表示希望死亡，22.4% 的人表现出自杀行为。无症状 SIH 患者 (n = 22) 的评分明显优于有症状患者，与一般人群相当。

根据我们的单中心队列研究，SIH 与严重头痛以及抑郁、焦虑和残疾的高发生率相关，影响日常生活的基本活动。确诊和疑似脊髓脑脊液漏的个体在这些指标上的得分相似，包括自杀倾向。成功治疗或自发缓解后，结果与一般人群相当。改进 SIH 的识别和治疗对于提高患者的生活质量至关重要。