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What Is IH?

May 6, 2010

This is a guest post by Victoria Taylor, in assosiation with the IH Research Foundation. Victoria is the author of Caitlin’s Wish, a children’s book for young carers. Thanks to Victoria and to all at the IH Research Foundation.

So what is IH?

IH is an invisible illness where the person looks “fine” when they are not! That is why I am taking this opportunity to help raise awareness for IH and the Intracranial Hypertension Research Foundation (IHRF), which is working hard to improve the lives of people affected by IH.

“Intracranial hypertension” literally means that cerebrospinal fluid (CSF) pressure within the skull is too high. Chronic intracranial hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability.

Anyone can develop chronic IH at anytime in life. There currently is no cure.

Old names for IH include pseudotumour cerebri and benign intracranial hypertension.

Most people have never heard of it, including many in the medical profession. If more people knew about IH, then patients might get treated with the compassion they

IH is sometimes caused by an existing medical condition, but it often occurs without a known cause. Idiopathic IH (IH that occurs without a cause) is considered a rare illness affecting 1 in 100,000, though the rate of incidence is as high as 1 in 5000 for some
people. Millions of other people have a condition or disease such as traumatic brain injury, stroke or kidney failure, in which IH can play a role.

There has never been a drug specifically developed to treat IH. Treatment options are limited. For some people, medication can help control intracranial pressure. But for others, the only choice is painful surgery to insert a shunt to drain the excess fluid from the brain. Since shunt surgery only has a 50% success rate, this frequently means many surgeries, with the accompanying risks. If sight is at risk, a person with IH often has to undergo optic nerve surgery to save their vision.

IH symptoms include:

Severe headaches (as if your head is in a vice),

Vision loss and/or blindness,

optic nerve swelling,

Pulse – synchronous tinnitus,

Sore/ stiff neck,

Back pain,

Memory/ cognitive problems,




Light headedness,


Noise sensitivity.

Chronic IH is life-altering, and robs people of their once happy and healthy existence. No two cases are the same, making it a difficult condition to manage.

For more information on IH, please go to the IHRF’s website:


The IH Research Foundation is the only non profit organization in the world devoted to supporting the medical research of chronic IH. Their mission is to discover why IH happens, along with new, effective therapies to treat the disorder. Their ultimate goal is to find a cure.

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