The present study contributes to understanding the severe impact of SIH, a condition that, despite its rarity, has profound consequences for affected individuals. Studies [19,20,21] indicated that diagnosing SIH is particularly challenging in patients with a history of chronic headaches. The process often extends over a longer period, especially when the characteristic orthostatic headache is not a prominent feature. These difficulties in diagnosing SIH may also be reflected in our cohort, where approximately one third of participants had chronic headaches prior to the onset of SIH and 65% of participants did not receive a diagnosis of SIH from a physician for more than 3 months. These delays underscore the necessity for enhanced diagnostic awareness and accelerated identification procedures to mitigate the multifaceted socioeconomic and health consequences in individuals diagnosed with SIH. This dichotomized analysis revealed two distinct groups: patients with radiological evidence of SIH and those without. This distinction highlights the diagnostic dilemma frequently encountered in clinical practice, where the absence of clear radiological evidence complicates SIH management. This challenge is common in SIH research and clinical settings, as studies have shown the complexity and variability of SIH presentations [21].

The long-term effects of SIH are underscored by the substantial proportion of participants who, since the onset of SIH, are either unable to work or have been forced into retirement, over one third of the cohort. Additionally, the fact that one third of respondents have been on sick leave for more than 1 year highlights the condition’s significant socioeconomic impact. This observation mirrors findings from previous studies that have pointed to the substantial effects of SIH on work capacity, as noted by Cheema et al. [12]. Moreover, the data show that over half of the respondents have been living with SIH for more than 3 years, underlining the chronic nature of this condition and echoing observations by Kranz et al. [22], which indicate the potential for persistent and intractable symptomatology associated with SIH. The deterioration of the condition reported by one third of the participants since the onset of the illness emphasizes the need for effective long-term treatment.

Our data reveal that most patients (40.7%) classified their headaches as severe, while 14% described them as extremely severe. This severe pain, combined with other debilitating symptoms, such as nausea, dizziness, tinnitus and balance problems, is also reflected in the psychological profile of those affected. Moreover, the fact that more than half have coped with SIH for over 3 years underscores the disease’s unrelenting nature. Analysis of the DASS-21 data, which consists of 3 self-report scales designed to measure the emotional states of depression, anxiety and stress, shows that 77.9% of participants reported elevated levels of depression, 96.5% reported elevated levels of anxiety and 89.5% reported elevated levels of stress according to the DASS-21 subscales. Further breakdown shows that approximately 37.2% of participants scored in the severe or extremely severe range for depression, approximately 36% for anxiety and 9.3% for stress on the DASS-21 severity scales. It is important to note that these results reflect self-reported emotional states rather than clinical diagnoses. For comparison, Cheema et al. indicated in their study that SIH patients have an average EuroQol-5 Dimension Visual Analog Scale score (EQ-5D VAS) of 36.4, highlighting substantial impairment. This score falls below those for other severe conditions, such as multiple sclerosis (59.7) and advanced Parkinson’s disease (52.0), underscoring the disproportionately negative impact on QoL for those with SIH. In contrast, a recently published study [23] reported significant improvements in health-related quality of life (HRQoL), measured by the EQ-5D-5L, and mental health, assessed using the DASS-21, in SIH patients following surgical closure of a spinal CSF leak. The EQ-Index increased from 0.683 preoperatively to 0.907, 6 months postoperatively, and the EQ-VAS improved from 40 to 72 over the same period. The study found that a relevant symptom burden due to depression, anxiety, and stress was highly prevalent among the patients and significantly improved after treatment. This suggests that patients’ psychological distress is largely a reaction to their physical illness. In contrast to the findings of Volz et al. [23], where the median duration of symptoms among participants was 5 months, our data show a longer duration of illness. This prolonged exposure to stressors associated with the illness could explain the higher DASS-21 scores for depression, anxiety, and stress observed in our study. Extended periods of illness are often linked with increased psychological stress, as they can lead to sustained activation of stress response systems [24]. This condition likely contributes to the differences in the psychometric profiles between the two study populations. Additionally, Volz et al. [24] reported better outcomes, which may be because only SIH patients with a confirmed leak were included in their study, whereas our cohort included patients with and without a confirmed leak. Furthermore, the higher number of patients who underwent surgery in their study compared to our study, where only about one third of the participants underwent surgery, could also explain the differences in outcomes.

However, another study revealed that nearly half of their cohort exhibited moderate depression and more than one in four showed moderate anxiety [25]. In this cohort, the frequency of suicidal thoughts and behavior was notably higher than in migraine patients and similar to that observed in cluster headache patients. In detail, over half of the patients expressed at least a wish to be dead and nearly one quarter acknowledged previous suicidal behavior. During patient interviews, many directly attributed their suicidality to their headache pain and the fear of never improving, although such disclosures were not formally recorded. Reflecting the depth of this impact, our research also found that the majority of the cohort felt deeply distressed by their ongoing battle with SIH. Moreover, our study indicated that SIH is not only a physical and mental ordeal but also one that deeply affects personal relationships. Nearly one quarter of participants reported significant relational strains, as shown in Table 6, with 11.6% experiencing break-ups or divorces. This highlights the profound stress that chronic diseases can impose on social and family life. These insights are in line with research that underscores the impact of long-standing pain and chronic conditions on relationships [13, 26]. This distressing finding points to a critical need for mental health support as an integral component of SIH care.

Our study’s findings necessitate a layered diagnostic approach to SIH, as encapsulated in Table 4, which underscores the complexity of clinical decision-making in this context. The data indicate that nearly 40% of participants received an MRI scan within 1 month of presenting SIH symptoms, with just over one third undergoing brain or spine MRI within 1–3 months. Approximately one quarter of the individuals received an MRI after 3 months. For more invasive procedures such as CT myelography, a higher proportion of tests were performed at 3 months. While a dynamic examination, such as dynamic CT myelography is essential for accurate localization of the CSF leak, especially when MRI alone is not sufficient to locate the exact site of the leak, our study shows that these invasive procedures are used less frequently. This may indicate a cautious approach due to the invasiveness of the procedures, or it may reflect complex cases where initial diagnostic attempts were inconclusive or where symptoms changed over time; however, it is also important to note that the results of dynamic myelograms are highly dependent on the experience of the performing physician [27]. Given the categorical nature of our data, it is difficult to directly compare median waiting times with those reported by Cheema et al. [12]. In their study, the median waiting time for MRI was 4 weeks (IQR: 11 weeks, range: 0–56 weeks), which is comparable to our cohort. A CT myelography was performed in 52.9% of their patients, a similar percentage to ours, but the median waiting time for CT myelography in Cheema’s cohort was 20 weeks (IQR: 36 weeks). The diagnostic results showed that CSF leakage or extradural CSF collection was identified in almost one third of participants, while 40.7% had evidence of IH on brain MRI without evidence of CSF leakage or extradural CSF collection. A further 15.1% had inconclusive findings, while 10.5% had no evidence of IH or CSF leakage on radiological imaging. This aligns with findings from a systematic review [8], which notes that 19% of SIH patients have normal brain and spine MRI results, presenting a considerable diagnostic challenge. The variation in the sensitivity of spinal investigations for CSF leaks, with detection rates of extradural CSF between 48% and 76%, suggests that a substantial number of SIH cases might initially go undetected. Moreover, the same review indicated that 24% of cases involve multiple leaks, underscoring the necessity for a thorough and comprehensive approach in diagnostic imaging, further compounding the complexity of diagnosis.

In assessing the impact of various medications on SIH, the data show that analgesics and caffeine are the most commonly used treatments, with high administration rates (87.2% and 89.5%, respectively); however, their effectiveness appears to be limited, with a significant proportion of patients reporting minimal long-term relief. The high rate of analgesic use in our study suggests possible overuse of medication, which is a common problem in the treatment of chronic pain, as other studies have shown [28]. Patients often continue to take medication in the hope of relief, despite limited benefit. Such overuse may lead to further complications and highlights the need for more effective and targeted treatment strategies for SIH. The use of EBP in managing SIH reveals a complex picture of treatment efficacy. In our study, EBPs were frequently utilized, though the outcomes varied. Initial relief was achieved in a minority of patients, with complete and moderate improvement noted in 7% and just over one third of patients, respectively; however, the majority experienced little or no substantial benefit from the intervention, a trend that remained stable in the long term. Studies show varying treatment efficacies: 1 study [8] reported that 55.9% of patients experienced complete resolution of their symptoms after a single EBP, while another study [29] indicated that about 70% of patients still showed evidence of a persistent leak after EBP. Factors such as the volume of blood injected, the timing of the procedure, and individual patient characteristics can influence the effectiveness of EBPs. Therefore, a patient who continues to show symptoms after an EBP should be referred for adequate diagnostics and treatment at a specialized center to pursue targeted treatment. A prolonged duration of over 12 weeks [13] can increase the likelihood of chronicity and complications. Our data also indicate differences in the short-term and long-term effectiveness of various treatments. While some patients experienced improvements, it remains unclear which specific treatment in the sequence was most important. Despite multiple treatments, a significant number of patients did not show notable long-term improvement in their condition.

Surgery emerged as a significant intervention in the management of SIH, indicated in over one third of patients in our study. This rate of surgical intervention may reflect the complex nature of SIH in these patients or a limited response to evidence-based practices. Although there was an overall reduction in disability and headache intensity after surgery, some patients reported persistent symptoms. Consistent with the findings of Volz et al. [11], around one quarter of the patients in their cohort continued to suffer from considerable symptoms after 1 year. This persistence suggests that although surgery provides significant symptom relief for many individuals, it is not a panacea. The reasons for this are complex and may include factors such as the development of rebound intracranial hypertension or coexisting headache disorders. In the present study, 3 participants underwent intradural exploratory surgery without the precise localization of the CSF leak. This type of surgery presents significant challenges, increasing the procedure’s duration and complexity, as well as the risk of complications such as infection and bleeding. Consequently, patients frequently experience more severe postoperative pain and longer recovery times. Furthermore, there is an increased probability of the leak being undetected or inadequately repaired, necessitating additional surgical intervention. The necessity for additional intraoperative diagnostic procedures may further complicate and prolong the surgical procedure [30].

Analysis of specialist consultations for SIH patients shows that they frequently visit general practitioners and neurologists, indicating the need for ongoing management of persistent symptoms. The high frequency of visits to emergency departments, as shown in Fig. 2, also indicates that these patients significantly suffer from the physical effects of their condition. Despite the obvious psychological distress, the use of psychiatric services by SIH patients remains relatively low. This may indicate that psychological symptoms are often perceived as a reactive state to unresolved physical symptoms. Research, such as the recently published study by Volz et al. [23], suggests that psychological symptoms may subside if the physical complaints are effectively treated or alleviated. This underscores the importance of a holistic approach to treatment that comprehensively addresses both the physical and psychological aspects of SIH.

Our study, designed as a cross-sectional online survey, faced certain limitations. A significant concern is the potential influence of recall and self-report biases, which are inherent challenges when participants are tasked with retrospectively reporting medical histories, including treatments and diagnoses. This is particularly relevant as the severity and impact of SIH can change over time. Furthermore, selection bias presents a significant challenge in our study due to the recruitment of participants through online self-help groups. This method tends to attract individuals who may be actively seeking support or experiencing more severe symptoms. As a result, the findings could be skewed towards a higher severity of the condition, affecting the generalizability of our results across the broader SIH population. Compounding this issue is the absence of a control group entirely cured of SIH, which is intrinsically linked to the selection bias concern. The lack of such a control group limits the capacity to accurately assess the effectiveness of certain treatments and to validate some of the study conclusions. A control group, consisting of individuals cured of SIH, would have offered a crucial benchmark for evaluating the success of treatments and the progression of the disease, thereby providing a more comprehensive understanding of SIH’s dynamics and treatment responses. Although the inclusion criteria of the study were relatively strict, requiring participants to have undergone at least one EBP treatment and to have had at least one MRI scan of both the spine and the brain, there remains the possibility that some individuals without SIH have been included. This may affect the accuracy of the data; however, as described previously, studies [9, 10] have shown that different spinal imaging techniques were only successful in identifying evidence of extradural CSF leaks in a limited range of 48–67% of individuals, which is comparable to our study.