What is IH?

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”(IH) 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,
Back pain,
Memory/ cognitive problems,
Fatigue,
Malaise,
Dizziness,
Light headedness,
Photophobia,
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 IH Research foundation. http://www.ihrfoundation.org

I have spent the last decade devoted to raising awareness of IH and trying to help the IH community as much as possible. When I published my first book ‘Caitlin’s Wish’ in 2010, it was with the intention of helping children (young carers) affected by IH, just as my own children had been affected all those years earlier. I just wanted to help…as simple as that!

Nowadays my own health limitations mean that I’m unable to raise awareness like I used to, so from now on it’ll be through my writing whenever the opportunity arises. Here’s an example; a poem I wrote for rare disease day to show how IIH affects my husband every day.

I.H.
By
Victoria Lewin

Excruciating headaches torture every second, as their vice like grip tightens evermore.
The IH spear pierces your eyes which are ever so swollen and sore.
Vision eludes you, seeing double or blurred,
Until it affects you, IH sounds absurd.
Sunlight, whose arrival was once adored,
Now meets dread, and is thoroughly abhorred.
Its bright glare leaves you running for cover,
Searching for a shady place unlike any other.
Whooshing drums thud in your ears,
Drowning out the sound for years,
Driving you crazy every day,
With its refusal to go away.
Swirling rooms sway from side to side,
Rocking amidst vast oceans on a stormy tide.
Bilious tummies contend with endless malaise,
On this IH voyage where no-one had a say.
Aching bones and searing pain, perpetually tired with relentless fatigue,
Which hovers around you in its own league.
But although IH has stolen so many parts of my jig-saw,
I won’t let it beat me, not anymore!

IH and young carers awareness video from Victoria Lewin on Vimeo.

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