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.

512 people with IIH took part in a survey by email to IIH UK members or via links shared on IIH UK national and regional social media sites.

The survey asked: In one sentence explain how IIH headache has impacted/changed your life. How does it make you feel?

Common words from peoples responses were used to create a graphic (Figure 1) using WordleTM.

Figure 1. Visual representation of common descriptors of the impact of headache in IIH.

Peoples responses were also analysed by the research representatives for IIH UK to see if there were any common themes.

The following themes were identified int eh responses

• Changes in peoples participation (Social, Work, Hobbies, Family roles)
• Affects on mood and well-being
• The additional impacts of wider symptoms adding to the effects of headache
• The overwhelming, debilitating nature of headache.

Some examples of the responses are below to expand on the themes above -

"It has completely changed my life over the past few years, it effects my work, my social life, everything"

"It makes me feel worthless and like a failure and suicidal, I'm a shadow of the person I once was."

"IIH headache is miserable and lonely. Nobody understands how debilitating it is.

The survey showed the breadth and depth of the impact of headache in IIH. It also showed that outcome measures used in research may not capture all elements of resultant disability. This survey highlights the need for more qualitative research to explore the lived experience of IIH to ensure that disability is not underestimated in this complex condition.

The results of the survey have been shared widely with IIH UK members. The results were also shared in a poster which was accepted for publication at the European Headache Federation which was held as an online conference in July 2020 (face to face conference having been cancelled due to Covid). The conference was widely attended by medical professionals working in the field of headache. A summary of the poster has also been accepted for publication as an abstract in the Journal of Headache and Pain. A full report will also hopefully be accepted for scientific publication to widen the impact of your responses.

A huge thank you to all who contributed to the research, IIH UK members, IIH UK research reps and trustees, Prof Alex Sinclair and Miss Susie Mollan.