Effective monitoring of a patient with idiopathic intracranial hypertension (IIH) for potential complications involves regular clinical assessment focusing on visual function and symptoms of raised intracranial pressure, alongside appropriate imaging and specialist referral when indicated. Visual monitoring is paramount because vision loss is the most serious complication; this includes formal visual field testing and optic nerve head assessment to detect papilloedema progression or optic atrophy. Symptom monitoring should include headache severity and characteristics, as worsening headaches may indicate increased intracranial pressure or complications. Regular neuro-ophthalmology review is recommended to guide management and detect early signs of visual deterioration.
Imaging, typically MRI with venography, is used initially to exclude secondary causes and may be repeated if clinical deterioration occurs. Lumbar puncture opening pressure measurement can be used to assess intracranial pressure but should be balanced against patient tolerance and clinical context. Monitoring should be stratified based on risk factors for progression, such as degree of visual impairment at diagnosis, severity of papilloedema, and headache burden, with higher-risk patients requiring more frequent and intensive follow-up.
In primary care, prompt recognition of new or worsening visual symptoms or neurological signs should trigger urgent referral to specialist services. Patient education on symptom awareness and adherence to follow-up is critical. Multidisciplinary involvement, including neurology, ophthalmology, and sometimes neurosurgery, is essential for comprehensive monitoring and timely intervention to prevent permanent visual loss.
Recent literature supports a stratified monitoring approach based on risk of progression, emphasizing individualized follow-up intervals and the use of objective measures such as optical coherence tomography (OCT) to quantify papilloedema and guide treatment decisions Onyia et al. 2019Markey et al. 2023. This complements existing clinical guidelines by enhancing early detection of deterioration.
Key References
- NG228 - Subarachnoid haemorrhage caused by a ruptured aneurysm: diagnosis and management
- NG232 - Head injury: assessment and early management
- CG150 - Headaches in over 12s: diagnosis and management
- CKS - Migraine
- CKS - Headache - medication overuse
- CKS - Headache - tension-type
- (Biousse, 2012): Idiopathic intracranial hypertension: Diagnosis, monitoring and treatment.
- (Onyia et al., 2019): Idiopathic intracranial hypertension: Proposal of a stratification strategy for monitoring risk of disease progression.
- (Markey et al., 2023): Idiopathic intracranial hypertension: expanding our understanding.