X-ray of human brain
IIH is a debilitating condition in which the pressure around the brain is severely raised, causing disabling chronic headaches

Female patients who suffer from a disabling neurological disorder known as idiopathic intracranial hypertension (IIH) are at twice the risk of heart conditions and stroke, a study led by the University of Birmingham has shown for the first time.

IIH is a debilitating condition in which the pressure around the brain is severely raised, causing disabling chronic headaches. It can also compress the optic nerve, causing permanent vision loss in 25 per cent of those affected. The condition is most common in women with obesity in their twenties and thirties.

A study, published today in JAMA Neurology, compared the GP patient records of 2,760 women with IIH with a control group of 27,125 women who do not have IIH. The women in the two groups were of a similar weight and age, with an average age of 32.

The researchers found that women with IIH were twice as likely to be at risk of cardiovascular disease, including heart failure and stroke, as women of the same weight and age without IIH.

The research, supported by the National Institute for Health Research (NIHR) and the Medical Research Council, also showed the increasing prevalence and incidence of IIH in women, which has more than tripled between 2005 and 2017. Incidence has increased from 2.5 to 9.3 per 100,000 person years.

The research was carried out by experts within Birmingham Health Partners, a strategic alliance between the University of Birmingham and two NHS Foundation Trusts – Birmingham Women’s & Children’s, and University Hospitals Birmingham (UHB), where members collaborate to bring healthcare innovations through to clinical application.

Professor Sinclair, of the University of Birmingham’s Institute of Metabolism and Systems Research, said: “With both prevalence and incidence of IIH on the rise, in line with a global increase in obesity, it is really important that we have this information so we can plan healthcare delivery and services to care for these patients who often feel they are overlooked.”

Professor Sinclair is also a consultant neurologist at UHB, leading one of the world’s largest IIH clinical services based at Queen Elizabeth Hospital Birmingham. By combining clinical neurology with translational research, Professor Sinclair and her team are now world leading experts in brain pressure.

Professor Sinclair added: “The study findings support broadening the care for IIH patients to include assessing and modifying cardiovascular risk as this may reduce long term complications from cardiovascular disease.

“IIH patients are typically identified at a young age, which could provide the opportunity for early assessment for modifiable cardiovascular risk factors, followed by appropriate management to minimise or mitigate these risk factors.”

Dr Nicola Adderley, Lecturer in Health Informatics and Epidemiology at the University of Birmingham's Institute of Applied Health Research, said: “Individuals with a high body mass index are at an increased risk of cardiovascular disease. We therefore wanted to compare women with and without IIH who had the same age and weight to establish if there was a difference in risk between women with and without IIH independent of weight.

“The increased risk of cardiovascular disease observed in women with IIH compared with those without IIH was over and above what we would expect due to obesity alone, and appears to be related to IIH itself.

“We hope we will now see further evaluation of this important observation to determine if a change to healthcare policy with early intervention in patients with IIH will improve their long-term health outcomes.”

Shelly Williamson, Chair of charity IIH UK which provides support for patients with the condition, said: “Whilst many women with IIH will be shocked by this important research, I am pleased that it is now known that IIH is a risk factor for cardiovascular disease.
“IIH is a debilitating condition and, in the future, widening of care for IIH patients to include assessing cardiovascular risk and ensuring they are monitored and treated accordingly may be an important step in patient care.”

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.
  • Adderley et al (2019). ‘Association between idiopathic intracranial hypertension and risk of cardiovascular diseases in women in the United Kingdom’. JAMA Neurology. DOI: 10.1001/jamaneurol.2019.1812
  • The authors of this research were Nicola Adderley, Anuradhaa Subramanian, Krishnarajah Nirantharakumar, Andreas Yiangou, Krishna Gokhale, Susan Mollan, and Alexandra Sinclair.
  • IIH UK is part of a collective voice of organisations that represent neurological conditions to further awareness and campaigning for improvement for the lives of patients and families affected by IIH. It works to ensure IIH is better understood by the general public and by all professionals with whom IIH patients come into contact. IIH UK is working closely with Professor Alexandra Sinclair and her team of clinicians in Birmingham.
  • Founded in 2011, Birmingham Health Partners (BHP) drives the development of new diagnostics, drugs and devices by bringing together a renowned University and two leading NHS foundation trusts. Its unique ecosystem enables the full spectrum of translational medicine: encompassing health data; an established local health system; academic excellence; and an extensive clinical trials capability. Read more at www.birminghamhealthpartners.co.uk
  • University Hospitals Birmingham NHS Foundation Trust runs the Queen Elizabeth Hospital Birmingham, Birmingham Chest Clinic, Heartlands Hospital, Good Hope Hospital, Solihull Hospital. UHB is one of the largest Trusts in England treating over 2.2 million patients each year, with regional centres for trauma, burns, plastics, neurosciences, dermatology and cancer.
  • 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