Links & Resources
Resources and links to sources of further information and support for Idiopathic Intracranial Hypertension (IIH). These links are provided as a source of information on websites operated by other parties. We do not control such websites and we take no responsibility for their content. These links are provided for information and our inclusion of links to such websites does not imply any endorsement of views, statements or information contained in such websites.
- IIH UK – the website of the UK's only charity devoted exclusively to IIH. IIH UK has a number of leaflets on subjects relating to IIH.
- IIHWeekender.org.uk – the IIH Weekender is a joint project between IIH Support and IIH UK. The first IIH Weekender was held in May 2008, and IIH Weekender events are held annually.
- MSN Pseudotumor forum – American based site with some good information and a place to chat to others with IIH. Also has links to magnification software.
- European PTC Support Group: Online forum set up and run by the Dutch PTC Support Group. The messages are in English and the site is pretty easy to navigate and find your way around.
- Intracranial Hypertension Research Foundation – The IHRF is the only non–profit international organisation devoted to supporting reseacrh into intracranial hypertension and ultimately finding a cure. The IHRF runs a patient registry, provides support for IIH patients, their families, and medical professionals, and produces a quarterly newsletter.
- Association for Spina Bifida and Hydrocephalus (ASBAH) – ASBAH's main emphasis is on spina bifida and hydrocephalus, but they also have some information on IIH.
- Brain & Spine Foundation – The Brain and Spine Foundation was set up in 1992 to develop research, education and information programmes aimed at improving the prevention, treatment and care of people affected by disorders of the brain and spine
- Baylie for Brains – Baylie has both Chiari Malformation and IIH. The site has Baylie's journal, and information about the bracelets she sells to raise money for research.
- Melbourne Neurosurgery has a lot of information on neurosuregry, including shunt operation and lumbar punctures, and information on anatomy in an easy to read format
- Wikipedia has a very good explanation of IIH and it's symptoms and treatment
- Coventry Pain Clinic has a wealth of information on pain medication.
- Benefits and Work: a source of information on benefits and employment issues and lots more
- Benefits Now: self assessment tool for Disability Living Allowance and Attendance Allowance and disability equipment shop
- LumbarPuncture.net: LumbarPuncture.net is a site developed by a consultant neurologist, all about lumbar punctures, including information for medical professionals.
For much more information, links, and sources of information and help on matters relating to IIH and related symptoms and matters, see the "Info" section of the IIH Support forum (it's down near the bottom of the page on the main forum homepage).
