IIH UK Research

IIH UK funds, supports and promotes research that is informed by the priorities of people with IIH and health care professionals. IIH UK facilitates research into IIH, its treatments and possible cures.

IIH UK not only works with internationally renowned teams of researchers but also carries out and disseminates its own research projects working with our membership. IIH UK has 3 research representatives Amanda Denton, Dr Krystal Kirkby and Nisha Sedani (Click here for profiles)

Recent projects are detailed in descending date order below:

Obesity Stigma in people with IIH

In 2021, IIH UK carried out a survey in response to members of IIH UK to see if they were experiencing stigma related to their weight in consultations with health professionals.

To find out more about the results of this survey and what IIH UK plan to do in response click here.

2020 Report into the effects of Lockdown on those people living with IIH.

In March 2020 the UK and world experienced an unprecedented event of a global pandemic Covid-19. In the UK lockdown started on March the 23rd and IIH UK was keen to capture the impact on the lives of people with IIH. A great response was received to the IIH UK short survey about lockdown. 121 people responded to the survey which ran from 24/05/2020 to 24/06/2020. 120/121 who responded added additional comments to explain their response.

You can read the Life in Lockdown Report HERE.

2019 What is the lived experience of headache in the words of people with IIH?

In November 2019 IIH UK carried out a piece of research to capture the experience of living with headache in people with IIH in their words. Previously research reports of headache in IIH show that it affects quality of life (SF-36); causes disability (HIT-6) and is daily in most (86%)(4–6). The James Lind Alliance Research Priority Setting Partnership also highlighted that headache is an unmet need in IIH(3). However the voice of people with IIH describing their experience has not been reported previously.

Lived experience of headache in people with IIH report Here.

2018 Physical activity, quality of life and headache impact in people with Idiopathic Intracranial Hypertension

Research Reps Amanda Denton and Dr Krystal Hemmings (University of Derby) and a Physiotherapy researcher from Plymouth University Dr Hilary Gunn carried out and analysed this survey. An online survey was sent to people with IIH to complete. The survey contained measures of physical activity, quality of life and headache impact. 164 pwIIH took part and their information was analysed. The results showed that pwIIH have low levels of physical activity and take little exercise. Physical activity is related to quality of life in pwIIH. Physical activity was not related to age, current or diagnosis BMI (Body Mass Index) or headache impact score in pwIIH.


The results suggest that improving physical activity in pwIIH could positively impact on quality of life. Ways to increase physical activity such as exercise should be explored in pwIIH.

Click here to read the 2018 Physical activity, quality of life and headache impact in people with IIH report.

2016 and 2018 Barriers to Weight Loss and Exercise

Research reps Krystal Hemmings and Amanda Denton put together two surveys to people with IIH to firstly identify perceived barriers to weight loss and exercise and then to rank these in order of importance. The survey highlighted that exercise exacerbates symptoms of IIH for many and that there was a mismatch between researchers perceived benefits of weight loss and participants perceptions of the effect of weight loss on their symptoms.

Top 3 perceived barriers to weight loss – Fatigue, Pain and Mood

Top 3 perceived barriers to exercise – Fatigue, Headache and Dizziness

The results show that further research is needed to understand why some people with IIH experience exacerbations of their IIH symptoms with exercise. Explore what type of exercise is best for pwIIH and that there is a need to explore the barriers to weight loss and exercise with pwIIH at greater depth.

Click here to read the barriers to weight loss and exercise report.

2016 Illuminating the Patient experience of Lumbar Puncture:

A survey carried out by IIH UK, which exposed the toll on patients of undergoing repeated Lumbar Puncture, has spurred a collaborative research project and paved the way for improved clinical management. Illuminating the Patient Experience of LP

Characterising the patient experience of diagnostic lumbar puncture in idiopathic intracranial hypertension: a cross-sectional online survey. This patient initiated research aimed to guide future clinical practice of Lumbar Puncture.


Contact Us

Interested in getting involved with IIH UK?
Questions? Comments on our website, or want to know more about what we're planning? 
Also if you are a medical professional and would like to receive printed IIH UK Patient Leaflets, please email: