IIH | What's Wrong With You? #IIHAwarenessMonth



September is the month IIH sufferer's call on you to help raise awareness for the rare brain condition we live with everyday...

I doubt you've heard of Idiopathic Intracranial Hypertension, I hadn't either, but recently the media (yeah, I'm looking at you Daily Mail) totally dragged it through the mud. Then shit on it. Then set it on fire. Then spat in our faces and laughed at us. Well, they might as well as done. A storyline popped up on Holby City which also portrayed the brain disease as meaningless and self-inflicting. It's easy to write feeling angry and upset but the message behind this post doesn't come from a place of self-pity, I want to spread education and raise awareness.

My journey began way back when in June 2013, here I wrote a short post shortly after my diagnosis. Imagine trying to fill a regular 250ml Coke bottle with 2 litres of Coke. It just wouldn't work. The Coke would spill over the top because there's no room for it and imagine the pressure on the bottle's walls. Your skull is exactly the same as that bottle of Coke, it can't expand and once fluid begins to build up within it, it puts pressure on the brain, the eyes and the blood vessels. It's extremely painful and causes a mass of excruciating and unpleasant symptoms. In a nutshell, nobody knows why IIH appears, disappears or lingers and for that reason nobody knows how to cure it. There isn't even a medication specifically for treating it.

Brain surgery isn't on my bucket list. Realistically though, it's a very real and recurring path that sufferers have to take. The thing with brain/shunt surgery is - a part from the fact it's absolutely terrifying - that it leads you down the same route Pringles do; once you start, you don't stop. With a low success rate (which I should really know, I've forgotten and tried searching for it but to no avail - but 12 within a two year period isn't uncommon) you are taking a huge leap of faith.

Men, women and children who have IIH all too often battle with the Doctors who are supposed to be caring for them. 1 in every 100,000 people suffer with the debilitating condition but information and research is so limited that a lot of medical professionals don't know how to treat it correctly. This causes more than upset and anger, it causes real pain and a deterioration in health. Thankfully, national guidelines are beginning to be written regarding IIH which is a huge milestone.

IIH is a physical illness, like a broken leg or arm but because it happens inside the head, it's invisible to you. Look at my IG feed, my outfit posts or my profile photo on Twitter - I don't look sick but I am. You can't see me suffering from the headache that beats any migraine (I'm not belittling migraines, I can so imagine they're soul destroying too), you can't see how many spoons I've used in energy just to take part in a twitter chat, the frustration of writing a post that I could have written so well many moons ago but no longer can because of the brain fog and cognitive impairment. For someone who has IIH even talking causes pain, heaven forbid catching a cough or cold.

Share this post, visit the IIH UK website and consider making a small donation, use the #IIHAwarenessMonth hashtag to tweet about it, even just google it. Please just be aware that IIH exists. Any of the small things above will make a big difference and I'll be so, so grateful.

If you're feeling charitable or just want to do your good deed of the day; text HOPE12 £3 to 70070!

7 comments

  1. Wow! What a nasty condition to have. Until I read this, I had no idea what it was. Thank you for raising awareness and I hope that silly media companies like the Daily FAIL get their act together. I have shared this on my Twitter for you! x x x

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  2. My goodness, I had never heard about this condition until I read your post. Thank you for sharing your story and for raising awareness, it's so hard especially when companies like the Daily Mail get involved and get it wrong! I will definitely take more of a look into and make a donation xx

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  3. I'm sorry to hear what you're going through. I was diagnosed with IIH after spending lots of time in hospital and numerous lumbar punctures earlier this year. It was horrible, and it got to a point where they told me that I'd need surgery. I was petrified! Then I saw a couple of new doctors who said I now don't have IIH, and was being treated for the wrong thing. They're still trying to work out what's wrong, and if it is IIH, but it's a bloody nightmare going from doctor to doctor!

    Sending you a big hug! xo

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    1. Oh no, I'm so sorry to hear your story too. It's so frustrating and confusing, not to mention scary when you are being told different things by all different Docs. As I mentioned, the national guidelines are just beginning to be written up regarding IIH which should make a big difference in the way patients are diagnosed and treated. It currently feels like a postcode lottery as to if you'll see a Doc that is actually knowledgeable - I know a lot of people travel to Birmingham/London where there is a specialist. At the end of the day, you know your own body. I hope you come closer to finding out an answer soon!

      Massive hugs and loves to you! xxx

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  4. Proud of you babe! So glad we are doing this together this month. Getting the word out there and spreading awareness when its so desperately needed.
    #IIHwontbeatus!!!
    Kate iihmakeupandglitter.blogspot.com XxX

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  5. I ma sorry you are suffering from IIH and how frustrating for the press to make such a mess of this.

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  6. Must admit I've never heard of IIH but it seems to have some similarities to epilepsy; hard to diagnose, no obvious physical symptoms to the outside world and a misunderstood physical condition. Wishing you all the very best and hope either surgery works or some other treatment brings you relief. It sound very real to me.

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