Why do we need support?
Although IIH is not fatal, the few known treatments can have life-threatening side effects and no drug has ever been developed specifically to treat it. Conventional prescription medications do not work for the intense pain nor are they able to completely reduce the CSF pressure within the skull. Although not fatal it can leave its sufferers unable to live their lives as before.
Until recently IIH has attracted comparatively little attention in the medical research community. The Intracranial Hypertension Research Foundation (IHRF) Registry needs patient information and your support to help gain awareness for this terrible disorder and those who suffer with it.
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Welcome to our website dedicated to the support of IIH sufferers and their family and friends.
Those of us diagnosed, supporting, or caring for family members and friends with Intracranial Hypertension often find ourselves at the end of the tunnel with no light in the darkness. Our lives have been dramatically changed by a very painful illness with no cure. As the months and the pain drag on without end, it is so easy to loose the hope that we all started with. This website is dedicated to sharing that pain and in doing so, igniting a small glimmer of hope, a light to hold to.
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Imagine Our Story
Disclaimer- The information & opinions shared on this site are by no means medically sanctioned, we are not physicians but patients & simply wish to support others who suffer the same disabling illness.
You look fine today......
so you must be gettling better!
Be sure to check the lists and links page. Not only will it have our email address but a list of links to other websites that we have found useful and informative in our quest to learn more about our disorder and all it entails. There may also be from time to time a few that are just for uplifting the spirit or finding a favorite quote to keep us going. Check back often as these may sometimes change as we add new and delete old ones.
We also have a Blog and a Facebook Page.
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Contact Lists and Links
What is IIH?
Idiopathic Intracranial Hypertension is a neurological disorder in which the (CSF) cerebrospinal fluid pressure within the skull is abnornally high and remains elevated for no apparent reason. Chronic IIH causes constant head pain/pressure, a loud squeal in the ears (tinnitus) and swelling of the optic nerve (papilledema) that can lead to vision loss/blindness, and other symptoms. Its effects are felt physically, financially, emotionally and to date there is NO CURE.
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This website was last updated: May 15, 2012
Now Open!!
Our Store online has a few items available for purchase to promote awareness and support for IIH. All profits from these items will be forwarded to the Intracranial Hypertension Research Foundation (IHRF). It's just our way of generating some funds to help further research and awareness for this terrible disorder. Hopefully someday all our efforts and yours too will led to a Cure.
Keep watching our site, as we may to add new things in the future.
Our Story Too
Our Story Too is a collection of writings from other IIHer's that have graciously agreed to put into words their story, their experiences living with Intracranial Hypertension. Some you will read, may be from the newly diagnosed, some from those who have had it for longer but all with a unique and equally heart felt story to tell. These wonderful spirits have endured many trials, emotional and physical and are learning to find in themselves and together the inner strength needed to keep on fighting. My Story Too is dedicated to the hope that we can express in words what is so difficult for others to understand and see. Hopefully through our experiences Awareness can bloom.
Presently adding...
IIH videos
Come join us on Facebook too. All IIHer's and their families welcome.
