What Is IIH? Idiopathic Intercranial Hypertension Explained By Natalie Peeke

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September has always been one of my favourite months , the leaves starts to change colour , the temperature starts to drop, wearing slippers and snuggling under a blanket is more acceptable. Children return to school with new school uniform and start a new chapter of their lives. Everything just feels like it’s changing and I love it. However the past 2 years September has also meant something else to me, it is the month of awareness for IIH. 

What is IIH I hear you ask ? It stands for Idiopathic Intercranial Hypertension. Clear as mud right ? When the doctor told me that he said it with his serious doctor face on and I chuckled and said ‘in English?’ Basically it means that I have high fluid pressure in my brain , idiopathic means that they don’t know what the cause is. 

So I’m going to talk to you about some of the fabulous symptoms that go with having IIH in order to raise awareness for this rare condition. 

  • a constant throbbing headache which may be worse in the morning, or when coughing or straining.
  • temporary loss of vision. 
  • feeling and being sick
  • feeling sleepy
  • feeling irritable
  • finding it difficult or painful to look at bright lights 
  • hearing a pulsing noise in your ears
  • problems with co-ordination and balance
  • mental confusion
  • loss of feeling or weakness

Glorious isn’t it? IIH is often treated with medication , I am taking a drug called Acetazolamide which comes with its own and rather long list of side effects. The one that has effected me most is my sense of taste , especially with drinks, pop especially cola now tastes so bitter I can’t stand to drink it. And fruity drinks tast very sour. 

As of yet there is no cure for IIH but the lovely people at www.iih.org.uk are constantly raising money for better , more effective treatments as well as supporting those affected with IIH and their families. 

For me personally some days are are bearable , and others are not. Everyday is painful but what keeps me going is the support I have from my family , my amazing partner , beautiful children as well as the online community, with a rare condition it can be easy to feel as though you are alone and that others don’t understand what you’re feeling but there is always support out there. No one is alone.