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 A Way To Explain IIH To A Non Sufferer

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PostSubject: A Way To Explain IIH To A Non Sufferer   Sat Oct 16, 2010 8:30 pm

How can I make them understand my IIH?
How can I explain I have IIH?

If you find yourself unable to get friends, colleagues or even family to understand what IIH is, and what it does, then this explanation might come in handy and be of some help.

IIH affects around two people in one hundred thousand, and usually affects women, although children and men can also suffer with IIH.

You could start by asking them to imagine a big hand in their head squeezing their brain, while at the same time fingers feel like they are trying to poke out the backs of their eyes, that’s what an IIH headache can feel like. It's actually the high pressure of the fluid that is around the brain causing this kind of feeling. When there is too much of it present it causes the pressure around the brain to go up. The reason it does this, is because there isn't enough space for the fluid to expand, and this causes the symptoms.

Idiopathic means cause unknown, intracranial means head, and hypertension means high pressure, which gives the condition its name. It has also been known as Benign Intracranial Hypertension and Pseudo tumour Cerebri, pseudo means false, as it acts like a false tumour. It is now more commonly called Idiopathic Intracranial Hypertension.

All sufferers of IIH have the following symptoms, and they are severe and occur daily, and can be described as throbbing headaches which can last for hours, and are often mistaken for migraine. Often there is nausea and sickness. There is also pain behind the eyes which can worsen with movement. Visual blurring can occur, as can obscuration’s such as blobs of black and smoke like wisps (known as floaters). There is also double vision, and in some cases sufferers experience visual loss in one eye or both, for up to around 30 seconds, before it returns to normal. Sufferers also experience what is termed "pulsatile intracranial noises", which can be described as either a thumping, a heartbeat or more commonly a whooshing sound.

Diagnosis is usually made by lumbar puncture, which involves drawing out spinal fluid through a long thin needle in the lumbar region of the back. Also the back of the eyes are checked for swelling known as papilloedema. These are then followed by MRI and CT scans to give a clearer picture of what was it happening to the brain.

Once the diagnosis is made, it is treated with medications and in many cases surgery, IIH generally has no serious consequences. If visual loss occurs, however, it may be permanent regardless of treatment. In some cases, IIH can go into a remission phase. Although there are linked causes to IIH, it isn't known for sure what causes it. There is no cure.

It is a very debilitating disease, and often leads to depression, due to the constant pain, fatigue, loss of balance, tinnitus, and confusion experienced on a daily basis, as well as the worry of vision loss. Vision is regularly tested and sufferers monitored, and then they can be revised to once or twice a year depending on whether the Neurologist/Ophthalmologist is happy that vision is stable. IIH is not a short term condition but a life long condition. Remission can occur and last long or short term. The condition itself is treatable, and when treatment is started early, vision loss can be reversible.
If symptoms persist and cannot be managed by medication and lumbar punctures alone, then surgery is usually the next step. The surgeries commonly used are Ventriculoperitoneal shunt (VP) or a Lumboperitoneal shunt (LP).

IIH is not life threatening but it is lifestyle threatening.

Last edited by Heidi on Tue May 08, 2012 1:11 pm; edited 3 times in total
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PostSubject: Re: A Way To Explain IIH To A Non Sufferer   Thu Dec 29, 2011 6:43 pm

Hi Heidi Smile

thank you very much for this!

It is so hard to try and explain this condition to some people but this really summed it up Smile

I have sent it to a couple of friends, along with the spoon theory, in hopes that my condition will become more clear.

Lots of love!

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