New research using Hospital Episode Statistics has found that the IIH incidence is rising (by greater than 100% over the study), highest in areas of social deprivation and mirroring obesity trends. Re-admissions rates are high and growing yearly. The escalating population and financial burden of IIH has wide reaching implications for the health care system.

Read 'The expanding burden of idiopathic intracranial hypertension' here:
https://www.nature.com/articles/s41433-018-0238-5



University of Birmingham Press Release

Date: 15th October 2018

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.”

IIH UK Chair Michelle Williamson said: "The consensus guidelines are a huge step forward for the management of IIH and the people we support are extremely grateful that there are now guidelines in place.  As a Patient Charity we hear on a daily basis the suffering that people with IIH go through, for some people with IIH it can impact on every aspect of their life. We are hopeful that these consensus guidelines will revolutionise the treatment of IIH.”

For more information please contact Emma McKinney, Communications Manager (Health Sciences), University of Birmingham, Email: This email address is being protected from spambots. You need JavaScript enabled to view it. or tel: +44 (0) 121 414 6681, or contact the press office on +44 (0) 7789 921 165 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Notes to Editors:
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. https://www.ncbi.nlm.nih.gov/pubmed/29903905

To listen to a podcast of Dr Alex Sinclair discussing these guidelines visit: https://soundcloud.com/bmjpodcasts/idiopathic-intracranial-hypertension-guidelines-for-diagnosis-and-management/s-6rx2t

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
  6. For further information, visit the NIHR website (www.nihr.ac.uk).

About Idiopathic Intracranial Hypertension

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.


Idiopathic intracranial hypertension: consensus guidelines on management 
The IIH Guidelines have been published today (15/6/18) in association with:
Lead by Dr Sinclair and Miss Mollan 
A multidisciplinary team from the UK
Association of British Neurologists 
Royal college of Ophthalmologists 
Society for British Neurological Surgeons 
British Association for the Study of Headache 
Patients 
Key leaders in the field from Europe and US

Thank you to everyone involved, the future for IIH Patients is looking brighter.

 


We are excited to announce that our Research Paper ‘Characterising the patient experience of diagnostic lumbar puncture in idiopathic intracranial hypertension: a cross-sectional online survey’ has been published in the BMJ Open today. 30/5/18

This is our 1st piece of research to be published and a big thank you goes to the clinical team at UHBirmingham for making this happen.

Our thanks also go to all of the IIH Patients who took part in the survey, we couldn’t have done this without you. It is our aim that the findings from this research will help guide future clinical practice.

Follow the link to read the abstract then click on the pdf symbol to read the whole article. This article is open access so no need for a subscription.

Characterising the patient experience of diagnostic lumbar puncture in idiopathic intracranial hypertension: a cross-sectional online survey:

http://bmjopen.bmj.com/content/8/5/e020445


Participation request for research investigating the specific barriers to weight loss and exercise in idiopathic intracranial hypertension.

 

IIH UK's research Reps Amanda Denton (Plymouth University) and Krystal Hemmings (The University of Derby) would like to invite you to take part in a research study, which is investigating the correlations between weight and physical activity levels with headaches and quality of life in individuals with IIH, as well as the specific barriers to weight loss and exercise.

Taking part will involve taking measurements of your weight (with minimal or no clothing on) and height (not wearing footwear) first thing in the morning and then answering an online questionnaire which should take 40 minutes to one hour of your time. A greater understanding of the relationship between these specific factors and an exploration of the barriers to weight loss and exercise in individuals with IIH could guide clinical treatment and advice and ultimately lead to the development of interventions.

If you would like to take part, please click on the link below which will provide you with more information.

This survey has now closed. 


Our First Research Paper has been published! Illuminating the patient experience of LP. You can read it HERE


The IIH Pressure Trial is recruiting now, you can read more about it on our Research page HERE


Back in May 2017 our Trustees Shelly Williamson and Norma-Ann Dann recorded a series of Educational Video's. You can view them here



Watch our James Lind Alliance IIH Priority setting partnership video
to learn about why this collaboration with the James Lind Alliance is important.

Read all about the IIH PSP and how your responses to the PSP survey will help shape future IIH research. Please click here to find out more!


You can read the IIH UK Patient conference reports here: 2017 / 2016 / 2015 


Are you a clinician or trainee with an interest in IIH?  The 2018 CSF disorders day takes place on Friday 12th October, aimed at consultants in neurosurgery, neurology, ophthalmology, neuro-radiology and those with a special interest in CSF disorders and headaches inc Trainees. Booking details coming soon. 


Read all about the previous CSF disorder days here:
 
2016 / 2015 

 


Our patron Dr Alex Sinclair features in Lancet Neurology in the form of an interview were she spoke about headaches and how she felt headaches have an enormous impact on patients lives. 

Click here for the full article.


 

 

 Clinical Trials Recruiting Now!

 

  

The Drug trail is no longer recruiting IIH Patients - However people with a BMI>35 without IIH are still needed for the trial as control patients. Contact the Trial Team for more information This email address is being protected from spambots. You need JavaScript enabled to view it.

 


IIH UK is members of the following organisations.