IH is an invisible illness where the person looks “fine” when they are not!
My husband was diagnosed with IIH in 2003, and the Caitlin’s Wish story is based on our lives as we came to terms with all the changes. 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.
Currently there 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 deserve!
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,
Memory/ cognitive problems,
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 IH Research foundation. http://www.ihrfoundation.org
The I have IIH foundation provides support and advice for IH sufferers and their families.
This is a booklet I wrote for the I have IIH foundation.