Idiopathic Intracranial Hypertension (IIH) mainly affects women of childbearing age.
A woman injecting herself with obesity medication (Image: Getty Images)
Sufferers of a rare, debilitating condition causing headaches and sight-loss are needed for a new UK research trial – to see if weight-loss jab Mounjaro cures it. Idiopathic Intracranial Hypertension (IIH) mainly affects women of childbearing age, with 90% of those living with it also experiencing obesity – with only around 5,000 estimated sufferers in the UK.
Now the University of Birmingham, with high street experts Specsavers, are launching a year-long trial to see if weight-loss drugs can reduce symptoms – after past studies linked IIH with obesity and metabolic dysregulation. During the trial, participants will receive the weight loss drug Tirzepatide, marketed as ‘Mounjaro‘, and will have Optical Coherence Tomography (OCT) eye scans at a Specsavers to monitor swelling of the optic nerves, called papilloedema – which is caused by intracranial pressure.
The study is delivered through the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC).
Dr Maria Lange, from the University of Birmingham and co-investigator on the trial said: “IIH is a debilitating condition.
“After years of research to better understand the condition, this innovative trial will see whether weight loss, achieved by using the weight loss drug Mounjaro, could have a significant positive impact for patients.
“As GLP-1 medicines such as Mounjaro have become available for weight management through the NHS, we hope that the IIH Advance trial will establish a link between losing weight using these drugs and reducing the symptoms of IIH.”
Welcoming the trial, Specsavers director of professional advancement Paul Morris said: “IIH is a serious condition that can lead to blindness,
“The role that community optometrists and their skilled teams can play in harnessing technology to detect serious eye conditions is pivotal. That’s why regular sight tests are so important.
“We welcome this innovative trial and are looking forward to collaborating with participants in it as well as the team at the University of Birmingham.”
Optician and young woman during eye test (Image: Getty Images/Westend61)
People with a diagnosis of IIH who have papilloedema and live in the UK will be eligible to take part and are invited to self-nominate themselves to the trial.
Dr Jessie Gew, from the University of Birmingham and co-investigator, adds: “IIH patients can now directly contact the trial team to self-refer.
“Once contact is made, our team will work closely with each participant to review relevant medical documentation and confirm eligibility for the study.”
No doctor’s referral is required nor any visits to the trial centre in Birmingham are required.
Each participant will receive regular deliveries of Mounjaro to their home and will have regular calls with a research team member.
They will also undergo eye scans at a participating Specsavers practice at the start of the trial, at six and 12 months, and at the conclusion of the trial.
Professor Alex Sinclair, Consultant Neurologist and Professor of Neurology at University of Birmingham, and chief investigator on the trial said: “This trial is an example of the type of pioneering research that could ease pressure on the NHS through innovative community-focused collaboration with industry.
“We believe that this vision for a trial that streamlines care and empowers patients to participate and receive treatment from the comfort of their own homes is exactly the type of research that the NHS 10-year plan is calling for.”
Liz Formby MBE speaking at a conference (Image: University of Birmingham)
Headaches left me feeling “lost” and “shaking”
Retired civil servant Liz Formby MBE was recognised in the Queen’s Birthday Honours in 2015 for her career supporting education programmes – but has also spent 30 years suffering Idiopathic Intracranial Hypertension (IIH).
Liz has been working with researchers at the University of Birmingham and University Hospitals Birmingham NHS Trust for years in an effort to find treatments for IIH following her personal experience.
She said: “Anything that can help both inform and help reduce the debilitating outcome of having IIH will be so worthwhile for the person with it.
“It is also vital that those across the medical spectrum understand more about IIH and can recognise it, to get the help that is needed for the patient.
“Hopefully, with new research and knowledge gained from this trial, help can be given with dignity and more efficiently to those with IIH.”
Recalling her diagnosis 30 years ago she explained how one week she was driving to Wales to meet her brother and his family when her headaches left her feeling “lost” and “shaking”.
She added: “I eventually made it to the cottage and my family was shocked to see me sweating and clearly not well. But on returning to work, I realised I was struggling to see the computer screens in front of me.
“After another terrible car journey, I went to my local optician to speak to them. They carried out a field test and some other tests, then sent me directly to the hospital.
“I was kept in hospital as they initially thought I had a brain tumour, but I was diagnosed with IHH.”
Since her diagnosis, Liz has pursued an active and rewarding life – albeit with some activities she needs to avoid: “I learnt to not put myself in a position where I felt unsafe with moving lights, or things moving around me. I could not cope with going into a cinema, or into a room that had lights moving around, like a disco, concerts and gigs. In a loud family setting with lots of people around, I would remove myself from the group and go and sit in a quieter area.”
