IIH Weekender

the annual meet–up for idiopathic intracranial hypertension sufferers

Idiopathic Intracranial Hypertension

Idiopathic Intracranial Hypertension, or IIH as it tends to get abbreviated to, as it's a bit of a mouthful, can be as difficult to live with as it can be to say.

IIH affects between 2 and 7 people in 100,000. Though IIH sufferers are mainly 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. The visual loss and symptoms suffered by those with IIH, with treatment, often is recoverable, and visual symptoms can be limited, but even with treatment, visual symptoms such as blurred and double vision can be severe, and sufferers may lose peripheral vision.

The sort of effect seen on the right can be what an IIH suffer sees when they try to read. Blurred and double vision are common problems with IIH, and seeing the world through a fog like blur can make getting around outside and everyday life difficult, and add to the challenges faced by those with IIH.

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. The visual problems, memory problems, and confusion and other symptoms experienced by people with IIH can all combine to make even familiar places, and traffic, especially busy and crowded places, confusing and overwhelming, and as well as the pain and unpleasant symptoms experienced by people with IIH, it's common for people to lose the confidence to go out alone.

IIH is a rare condition, and sufferers may never have met or spoken to anyone else with the condition. For many people the IIH Support forum is a lifeline that allows them to communicate with other people with the same condition, and the IIH Weekender, a rare opportunity to meet up with others who share their problems. To find out more about the IIH Support forum and IIH UK, follow the links at the top of the page.

The IIH "Weekender"

| The History of the Weekender |

For as long as anyone on the IIH Support forum can remember (and that's a pretty long time!), forum members had being trying to arrange a national get-together. They had 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 was only been with the formation of IIH UK (which was quite a feat in itself!) that all of the plans finally came together, and in May 2008 we managed to put together 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 hoped that the first "Weekender" as the meet-up's become colloquially known on the forum, held in 2008 was the first of many. If 2011's is anywhere as near as successful as 2010's, it should be a great weekend!

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 the venue for IIH UK's Annual General Meeting.

Full details of the weekend's timetable are just about finalised, and for information about IIH and IIH UK, please see the links above.

Interested in finding out more about the IIH Weekender? Use our contact form to contact us! Everyone is welcome to come along to the IIH Weekender, you don't have to be a member of IIH UK or IIH Support to come along and join in the fun (though we hope you might be interested in joining us). If your life is affected by IIH, whether as a sufferer or as a carer to someone with IIH, or close to someone with IIH, you're welcome to come along! We don't bite (often!) and everyone who came to the Weekender last year, even those who'd been really nervous about meeting up with a group of "strangers", said they'd had a fantastic weekend and couldn't wait for us to announce details of the next one!

What are you waiting for...?