29/6/20  There has been an increase in sight threatening IIH. Please read this important message from Miss Mollan and Professor Sinclair. If you have any questions regarding this they can be discussed on our Fb Charity page HERE or Twitter @IIHUK


 27/6/20  Our Life in Lockdown report was launched today. You can read it HERE



~ Survey on the sensory experience of IIH ~

People with IIH experience symptoms of headache, tinnitus and visual disturbances. The purpose of this survey is to explore the sensory experience of these symptoms in the words of people with IIH. The results of this survey will be used by artist Mellissa Fisher (Artist in Residence at the University of Birmingham with the Centre for Systems Modelling and Quantitative Biomedicine) who will be visualising the data through sensory installations, raising awareness to the condition as well as understanding through art, science and technology as well as by IIH UK to raise awareness of the condition. The survey should take 5-10 minutes to complete.

If you are over 18 and experience headache/ tinnitus/ visual disturbances with your IIH you can take part via the link below:


Any data submitted through this survey will be anonymous. The survey is open until Fri 29th May.

Any queries please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

 17/03/2020  You can read the COVID-19 announcement HERE

headache cloudBreaking News! Birmingham researcher awarded £1.68m to fund research in 'raised brain pressure' 

Leading researcher Professor Alexandra Sinclair from the University of Birmingham’s Institute of Metabolism and Systems Research has been awarded £1.68m to fund research into intracranial hypertension (raised brain pressure), and develop a new treatment for Idiopathic Intracranial Hypertension (IIH), a rare condition that causes disabling headaches and can lead to blindness. You can read this exciting news HERE

Inspired by migraine artwork we are excited to launch our ‘IIH Art’ Competition. Migraine Art is renowned worldwide, let’s get IIH Art out there for the world to see just how devastating living with IIH can be. Our dedicated IIH Art Page will be up and running soon. 

 art posterart competition terms and conditions


Jewels in the crown: A century of progress in neurology. 
LINK: Centenary of key narratives in clinical neuroscience

We are delighted with the IIH Guidelines being cited in this article. This means that out of the thousands of papers that have been published in the JNNP over the last 100 years the IIH Guidelines were thought important enough to get a special mention. 

~ Attention Paediatricians ~ 

In association with the British Paediatric Neurology Association (BPNA) Dr Deepa Krishnakumar invites you to the Childrens Headache Network Idiopathic Intracranial Hypertension Study Day, Thursday 12 September 2019.

Follow the link to book your place. https://courses.bpna.org.uk/ecomm_product_buy.php?courseid=452

 ~ Breaking News ~ New research shows that women with IIH are twice as likely to suffer from Cardiovascular disease. 

Our Chair Shelly Williamson has said “While 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."

We are very excited to tell you about the most recent development in repurposing drugs for IIH.

Invex Therapeutics is a new company co-founded by Prof. Sinclair focussed on the development of treatments for Idiopathic Intracranial Hypertension (IIH) and other conditions in which raised intracranial pressure is problematic.

As a charity devoted to patient support we see and hear on a daily basis the suffering that many people with IIH go through, currently there are no drugs designed specifically to treat IIH and patient outcomes are often poor. Prof Sinclair’s research on Exenatide is ground breaking and for IIH patients worldwide the prospect of reformulating it to make it specific for IIH is truly amazing. To have a drug especially designed to treat the main symptom of IIH; raised intracranial pressure, is long awaited.

You may well be aware that reformulating drugs and the research required to ensure their efficacy and safety does not come cheap, orphan drugs are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions so we are very excited to see the formation of Invex Therapeutics. The company is raising $12,000,000 from the sale of shares to continue the repurposing and commercialisation of Exanatide through the execution of a series of development and other activities.

Delighted at this news our Chair Shelly Williamson has said ‘I am delighted to see the formation of Invex Therapeutics whose mission is to bring through new drugs for raised intracranial pressure and Idiopathic Intracranial Hypertension (IIH). It is vitally important that we can have effective safe drugs for IIH that are well tolerated. These are exciting times, and only with strong links between research academics, industry and patients can we make progress and bring new drugs through to improve patient care.'

Prof Sinclair will be answering any questions about this at our Patient Conference on 13th July, please email any questions to This email address is being protected from spambots. You need JavaScript enabled to view it. and we will endeavour to get her to answer as many as we can. 

Research led by the University of Birmingham has found that increased levels of hormones including testosterone could cause a brain condition that can lead to blindness in women.  


IIH UK welcomes new neurological patient experience survey

A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions. The survey aims to collect enough data to positively influence future neurology services.

About the survey
The survey is by The Neurological Alliance – an organisation that brings together organisations working to make life better for millions of people in England with a neurological condition. Through the patient experience survey, The Neurological Alliance aims to positively influence the future quality of neuro health and social care services. Too often services fall below the standard expected. This survey aims to help change that.

IIH UK fully supports the Neurological Alliance in its ambitions. We welcome the survey as an important tool in gathering shared insights across neurological conditions. The neurology community is strong when it stands together.

What will happen with the results?
The Neurological Alliance will publish the results in a report in summer 2019. This report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved.

The survey findings will be shared with IIH UK. We will use them to help us campaign for better patient care for people with IIH. 

The Neurological Alliance’s previous two patient experience surveys made a significant impact:
• Made the case for continued national leadership for neurology. National Neuro Advisory Group set up.
• Getting the National Neuro Advisory Group to prioritise care planning and communication with patients. Fed into NHS long term plan.
• Developed a programme of work on mental health and neurology, report published.
• Influenced the development of NICE guidance on suspected neurological conditions.
• Raised the profile of neurology through media work.

How do I complete it? The survey is open from 17th October 2018 to 17th March 2019. It is for anyone with a neurological condition living in England. Carers can help complete the survey as needed. The survey may take around 25 minutes to complete. Please be aware that you cannot save your answers and come back later. Your responses are completely confidential and anonymous.

Please click here to complete the survey. http://www.myonlinesurvey.co.uk/NA18PAT/  Thank you – each response makes a difference.

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:

Press Release Bubble
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 
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:


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

IIH PressureThe 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.

  Genetic Alliance Logo    Neurological Alliance Logo     JLA Logo    Alliance    ;NCVO Logo    RDD Logo