The patients’ perspective on the burden of idiopathic intracranial hypertension

Background Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we e...

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Bibliographic Details
Published in:Journal of headache and pain 2021-12, Vol.22 (1), p.67-67, Article 67
Main Authors: Witry, Max, Kindler, Christine, Weller, Johannes, Linder, Andreas, Wüllner, Ullrich
Format: Article
Language:English
Subjects:
Depression
Headache
Headaches
Hypertension
Internal Medicine
Medical diagnosis
Medicine
Medicine & Public Health
Mental depression
Neurology
Obesity
Pain Medicine
Patients
Pseudotumor cerebri
Research Article
Sleep
Sleep disturbances
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Summary:Background Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we evaluated the patients’ perspective on the burden of IIH. Methods For this cross-sectional study, we developed an online survey for patients with IIH containing standardized evaluations of headache (HIT-6), sleep (PROMIS Sleep Disturbance Scale) and depression (MDI) in relation to BMI, lumbar puncture opening pressure (LP OP) and treatment. Results Between December 2019 and February 2020, 306 patients completed the survey. 285 (93 %) were female, mean age was 36.6 years (± 10.8), mean BMI 34.2 (± 7.3) and mean LP OP at diagnosis was 37.8 cmH 2 O (± 9.5). 219 (72 %) of the participants were obese (BMI ≥ 30); 251 (82 %) reported severe impacting headaches, 140 (46 %) were suffering from sleep disturbances and 169 (56 %) from depression. Higher MDI scores correlated with higher BMI and increased sleep disturbances. Patients with a normalized LP opening pressure reported less headaches, less sleep disturbances and less depression than those with a constantly elevated opening pressure. Conclusions In addition to headaches and visual disturbances, sleep disturbances and depression are frequent symptoms in IIH and contribute to the patients’ burden. Structured questionnaires can help to identify IIH patients’ needs and can lead to personalized and better treatment.
ISSN:1129-2369
1129-2377
DOI:10.1186/s10194-021-01283-x