Idiopathic intracranial hypertension

I.I.H., benign intracranial hypertension (B.I.H.), pseudotumor cerebri (P.T.C.)

What is idiopathic intracranial hypertension?

IIH is a condition characterised by increasing pressure around the brain.

What causes idiopathic intracranial hypertension?

The cause of idiopathic intracranial hypertension is often unclear. Symptoms can usually be relieved with treatment, but may come back.

What are the symptoms of idiopathic intracranial hypertension?

Symptoms of IIH include:

  • a constant throbbing headache
  • temporary loss of vision
  • feeling sick

Are you affected by idiopathic intracranial hypertension?

If you’re affected by idiopathic intracranial hypertension, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with idiopathic intracranial hypertension, emotional support such as counselling, phone befriending and group therapy and social activities to people with idiopathic intracranial hypertension from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with idiopathic intracranial hypertension

Idiopathic intracranial hypertension is an invisible condition and, as such, it can be difficult for others to understand. It is important to realise that someone affected by IIH may be struggling emotionally as well as physically.

We support carers, friends and family too

Are you a carer for or relative of someone with idiopathic intracranial hypertension? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including idiopathic intracranial hypertension, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on idiopathic intracranial hypertension and on a wide range of disability-related issues.

This includes a copy of the Journal of Neurology, Neurosurgery and Psychiatry article Idiopathic Intracranial Hypertension.

Support groups

IIH UK Support Facebook group

Support groups at The Brain Charity

Are you interested in setting up a support group for idiopathic intracranial hypertension, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

IIH UK (organisation raising awareness of IIH)

19 Woburn, Washington, Tyne and Wear, NE38 7JX

Website: www.iih.org.uk