Background and objectivesPostdural puncture headache (PDPH) is an acknowledged consequence of procedures like lumbar punctures, epidural analgesia, and neurosurgical interventions. Persistence over more than three months, however has been poorly studied. In particular, little is known about the impact of persistent PDPH (pPDPH) on health related quality of life (HRQoL), disability and ability to work. The study aimed to provide a holistic understanding of pPDPH, encompassing medical, physical and psychological aspects.MethodsWe conducted a cross-sectional anonymous online survey in individuals aged 18 or older, diagnosed with, or suspected to have pPDPH via self-help groups on Facebook. Participants completed a structured questionnaire covering diagnosis, symptoms, and the ability to work. For assessing headache related disability, and mental health, they filled in the Henry Ford Hospital Headache Disability Inventory (HDI) and the Depression Anxiety Stress Scale-21 (DASS-21).ResultsA total of 179 participants (83.2% female, mean age 39.7 years) completed the survey. PPDPH had been present for one year or more in 74.3%, and 44.1% were unable to be in an upright position for more than one hour per day without having to lie down or sit down. Headaches were extremely severe or severe in 18% and 34%, respectively. According to the HDI, 31.8% of participants had mild, 25.7% moderate, and 42.5% severe disability. DASS-21 revealed substantial mental health challenges with depression, anxiety and stress experienced by 83%, 98%, and 88% of the respondents. The ability to work was limited considerably: 27.9% were unable to work, 59.8% worked part-time, 1.1% changed their job because of pPDPH, and only 11.2% were able to work full-time in their previous job. Despite treatment, the patients’ condition had deteriorated in 32.4% and remained unchanged in 27.9%.ConclusionThis study stresses the burden of pPDPH in terms of substantial disability, limited quality of life, mental health concerns, and significant impact on the ability to work. The study highlights the long-term impact of pPDPH on individuals, emphasizing the need for timely diagnosis and effective treatment. It underscores the complexity of managing pPDPH and calls for further research into its long-term effects on patient health and HRQoL.