IIH Weekender 2008

Idiopathic Intracranial Hypertension

IIH: Symptoms and effects

IIH, Idiopathic Intracranial Hypertension, affects between 2 and 7 people in 100,000. Though IIH sufferers are predominantly women, anyone, including men and children can develop IIH. It could be you. It's a rare condition and little is known about it's causes, and treatments for IIH are limited, and not always particularly effective.

IIH isn't life threatening, but it can be life changing. Some of the common symptoms of IIH include severe headaches, papilloedema (swelling of the optic nerve), dizziness, nausea, tinnitus, blurred and double vision, temporary loss of vision, and pain behind the eyes and with eye movement. Without treatment, IIH sufferers can suffer severe visual loss, and it's thought around 5% of people with IIH will lose their vision completely due to the condition. Other reported by people with IIH include: nausea, vomiting, fatigue, photophobia (dislike of and pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, memory problems (particularly short–term memory, but sometimes long-term memory loss can also occur), confusion, feeling 'spaced out', and lack of depth perception (for example judging the depth of stairs, steps, and curbs can be a problem). Loss of peripheral vision can be a problem for some people with IIH, and they may find unfamiliar (and even familiar) places, and traffic, especially busy and crowded places, confusing and overwhelming.

The IIH Weekender

For as long as anyone on the IIH Support forum can remember (and that's a pretty long time!), forum members have being trying to arrange a national get-together. They've come close a couple of times, and even once got as far as vaguely selecting a month, and sort of selecting a venue, but it's only been with the formation of IIH UK (which has been quite a feat in itself!) that all of the plans have finally come together, and we've managed to put together what we hope will be a fun-packed weekend, as well as a chance for forum members and indeed anyone affected by IIH, to get together and meet up and have a good old chat! We hope that this "Weekender" as the meet-up's become colloquially known on the forum, will be the first of many.

The IIH Weekender is a joint project between members of the IIH Support forum and the new UK charity devoted to the neurological condition, Idiopathic Intracranial Hypertension (IIH), IIH UK. It's primarily an opportunity for those with IIH, and those close to someone with IIH to meet up face to face, to have a chat, a laugh, and we also have something very special lined up for the weekend too. The Weekender will also be used as an opportunity to hold IIH UK's first General Meeting, and in subsequent years will be used to host IIH UK's Annual General Meetings.

For full details of the weekend's itinerary and information about IIH and IIH UK, please select the appropriate "tab" above.

Last Modified: 12/05/08

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