Latest News

On Friday 12th October, 2018 in Birmingham at the Everyman Cinema Dr Sinclair and Miss Mollan will be hosting the UK CSF disorders day. 

This one-day symposium will launch the IIH Guidelines (download the free article at  It will also showcase the clinical approach and research currently being conducted on disorders of ICP by both clinicians and translational scientists. 

The programme is aimed at Consultants in Neurosurgery, Neurology, Ophthalmology, Neuro-radiology and those with a special interest in CSF disorders and Headaches. Professions allied to ophthalmology are most welcome.

6 CPD points have been applied for.

To register please visit:  NOTE: This is not a public event. 

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. 

Thank you for your time!

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

We are pleased to announce the date of our 2018 Patient Conference and AGM - Saturday 7th July 2018.  It is our 10th birthday so come help us celebrate! 

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

 September Awareness Month is upon us, check our our Facebook page to see what we've been up to. 

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!

 2017 IIH UK Patient Conference and AGM

This year's IIH UK Weekender and Patient Conference including our AGM was held at the Golden Jubilee Conference Hotel, Beardmore Street, Clydebank, G81 4SA. Our conferences, fondly known as the 'Weekender', are a great opportunity for IIH patients to get together with their family, friends and carers. 



You can read the 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.

 We would like to wish Sandra Doughty, former chair of IIH UK all the best in her future ventures as she moves overseas. We also send best wishes to Alan Doughty, former Trustee who will be by her side. Both Sandra and Alan have helped move the charity forward during there years and their time has been greatly appreciated.

In a letter to members Sandra wrote "I have really enjoyed my time with IIH UK and will miss working with a caring team. IIH UK is in a great position and well respected by the medical community. I know that the charity will continue its close relationship with the great team of clinicians in Birmingham and am I am extremely grateful to have had the opportunity to work alongside them. My very best wishes to you all and hope that an effective treatment and eventually a cure is found for IIH."

Due to work commitments, Victoria Davies will also be stepping down from her role as trustee and we thank her for her time but will not be saying goodbye as she will still play an active role in the North West group and supporting IIH UK when she can.

Shelly Williamson, who most of you will know is now acting chair of IIH UK until the AGM and two members from the IIH UK Team, Clare Parr and Keri Burrel have been invited to join the trustee board and have accepted. We welcome Keri and Clare and thank them for joining us.

If anyone is interested in joining the team please do contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.


 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.