Alex Sinclair 900
Dr Alex Sinclair, of the University of Birmingham’s Institute of Metabolism and Systems Research

Experts led by the University of Birmingham have produced the first internationally collaborative guidelines aimed at improving the treatment and diagnosis of a rare condition which causes devastating high brain pressure.

Idiopathic Intracranial Hypertension - also known as IIH - is caused by high pressure in the brain with consequences from blindness to incapacitating daily long term headaches.

It mainly affects obese women in their 20s and 30s. Once regarded as rare, the disease incidence is now on the rise in line with the global rise in obesity. There are very limited treatment options and practices vary widely around the UK and internationally and, up until now, there have been no previous guidelines for the management of the condition.

Now new guidelines have been created by a group of specialists in neurology, neurosurgery, neuro-radiology, ophthalmology and neuroradiology, who have had expertise in managing IIH. The patient charity IIHUK also had an active role in contributing to the guideline development.

The team envisage that the new guidelines, published in Journal of Neurology Neurosurgery and Psychiatry, will revolutionise the treatment of the condition.

Extensive research was carried out to enable the creation of the guidelines, including a survey of consultants who investigate and manage IIH regularly, as well as a comprehensive systemic literature review. Sufferers of the condition were also heavily involved in the process.

The guidelines were also reviewed prior to publication by a range of professional bodies namely the Association of British Neurologists (ABN), the Society of British Neurological Surgeons (SBNS), the Royal College of Ophthalmologists (RCOphth) and the British Association for the Study of Headache (BASH). 

Senior and corresponding author Dr Alex Sinclair, of the University of Birmingham’s Institute of Metabolism and Systems Research, said: “This guideline will have significant impact on patient care internationally. It is a vital step to standardise and ensure safe, high quality care for all patients.”

Lead author Susan Mollan, of the University of Birmingham’s Institute of Metabolism and Systems Research, adds: “The guideline has highlighted multiple areas of uncertainty in the management of IIH. They represent key areas for future research. As further research emerges the guidelines will be updated.”

For more information please contact Emma McKinney, Communications Manager (Health Sciences), University of Birmingham, tel: +44 (0) 121 414 6681, or contact the press office on +44 (0) 7789 921 165.

  • The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 6,500 international students from over 150 countries.
  • Mollan et al (2018). ‘Idiopathic intracranial hypertension: consensus guidelines on management’. Journal of Neurology Neurosurgery and Psychiatry. DOI: 10.1136/jnnp-2017-317440 
  • Listen to a podcast of Dr Alex Sinclair discussing these guidelines.
  • Dr Alex Sinclair is also an Honorary Consultant Neurologist and Clinician Scientist at University Hospitals Birmingham NHS Foundation Trust.
  • Corresponding author Dr Alex Sinclair is funded by a National Institute for Health Research (NIHR): Clinician Scientist Fellowship (NIHR-CS-011-028).
  • The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research. Established by the Department of Health and Social Care, the NIHR:
  1. funds high quality research to improve health
  2.  trains and supports health researchers
  3. provides world-class research facilities
  4. works with the life sciences industry and charities to benefit all
  5. involves patients and the public at every step
  • Idiopathic Intracranial Hypertension is a rare condition, with an incidence in the general population of 1 per 100,000, rising to 20 per 100,000 in women who are obese.
  • IIH is caused by increased generation of cerebrospinal fluid, and characterised by raised intracranial pressure, resulting in disabling daily headaches and optic disc swelling.
  • A previous study by the University of Birmingham research team has shown that weight loss is successful in relieving IIH.