Parents, Carers and Family
Caring for someone with IIH can be very wearing and tiring both emotionally and physically and carers may also need support. Ensure that you make time for yourself, rest or go out and meet friends.
You may also find it useful to share your experiences with other carers. Your local council will be able to help you find sources of help in your area such as your local carers’ association, your local Citizens Advice Bureau are also a good source of information.
The Hope Programme
IIH UK is delighted to be working with The HOPE programme to develop and deliver a health and wellbeing intervention specifically designed for adults with Idiopathic Intracranial Hypertension. The course is based on positive psychology, mindfulness and cognitive behavioural therapy. HOPE has an established tract record of designing and delivering bespoke programmes for people living with long term conditions that impact positively on their wellbeing. IIH UK applied for and received a National Lottery Community Fund Grant in 2021 to support the development of this bespoke programme. In 2021 people with IIH and professionals working with people with IIH took part in Co-Creation sessions with The HOPE project team to look at what elements the course should contain. The HOPE course is free for all members of IIH UK and the first course is planned for March 2022. The course is virtual with opportunities to meet other people with IIH.
To join IIH UK click here. Details and dates of upcoming courses will be updated in the IIH UK members area soon.
What is IIH?
Idiopathic intracranial hypertension (IIH),also known as benign intracranial hypertension or pseudotumour cerebri, is a condition with an unknown cause or causes. The condition is associated with raised fluid pressure around the brain. The fluid that cushions the brain is called cerebrospinal fluid (CSF).