Spontaneous intracranial hypotension significantly affects quality of life

Key takeaways:

• Top physical complaints in those with SIH were head pain, neck pain and brain fog.
• Epidural blood patch was the most common treatment, which only resolved symptoms in 16.3% of participants.

SAN DIEGO – Spontaneous intracranial hypotension led to significant physical, mental and quality of life impact for a cohort of those with the condition, according to a speaker at the American Headache Society Annual Scientific Meeting.

“We know ... that patients with spontaneous intracranial hypotension have very high rates of headache disability, poor quality of life, high rates of depression, anxiety and even suicidality,” Deborah Friedman, MD, MPH, FAHS, professor of neurology, neurotherapeutics and ophthalmology at the University of Texas Southwestern, stated during her presentation.

Friedman and colleagues created a pilot inventory, designed with input from patients, family, friends and caregivers of those with spontaneous intracranial hypotension (SIH), from a recently held national conference to better understand the ramifications of living with the condition.

The cross-sectional survey included 98 adults (average age 50.6 ± 15.7 years; 64% female; 90.8% white; median time living with SIH 5 years) treated in the Headache and Facial Pain program at UT Southwestern between 2016 and 2022. All participants met ICHD-3 criteria or displayed symptoms of the clinical syndrome without a confirming MRI.

The survey covered measures such as symptoms, experience with the condition and treatments and theeffect of SIH on several aspects of daily life (relationships, employment, finances, transportation and faith).

Participants completed the survey either in person or on the online survey app RedCap, self-identifying as either symptomatic or symptom-free.

Data were stratified and analyzed by both diagnosis (confirmed and unconfirmed) as well as symptom status (successful treatment vs. symptom free).

According to results, the median time to SIH diagnosis was 2 years (IQR 0.5 to 4.8). A total of 25.5% of respondents did not receive a diagnosis for 5 or more years, while 75.5% of participants revealed that SIH was misdiagnosed as migraine, psychiatric issues, vestibular issues or idiopathic intracranial hypertension, and 58.2% of those who answered the survey felt their symptoms were dismissed by their health care provider.

Among respondents, the top physical complaints were head pain (100%), neck pain (87.9%) and brain fog (89.5%), while median upright time on the worst symptom days was 2.3 hours per day, and median recumbency prior to better function was 1.3 hours per day.

The top treatment among respondents was an epidural blood patch (98%), which only resolved symptoms in 16.3% of participants with a median relief time of 1.3 months. In addition, 16.3% underwent a successful repair of their leak or CSF-venous fistula, but 50% of that population expressed concerns the leak would return.

All aspects of quality of life were significantly impacted by SIH.

“Cognitive problems (were) much higher in our sample than in other cohorts that were previously reported,” Friedman said. “Most of our patients did not have sustained resolution and the impact of [spontaneous intracranial hypotension] is far reaching into every aspect of life.”