02/09/2026
September is IIH Awareness Month 💚💙
But what actually is IIH?
IIH stands for Idiopathic Intracranial Hypertension
In simple terms, there’s too much pressure inside your skull, without another identifiable cause explaining why that pressure is there
It used to be called pseudotumor cerebri because the symptoms can mimic those of a brain tumour
But IIH is NOT a brain tumour.
And it is so, so much more than “just a headache”
I was diagnosed with IIH over a decade ago, and unless you’ve experienced intracranial pressure, I don’t think it’s possible to adequately explain what that “headache” actually feels like:
Imagine your head being crushed in a vice, while simultaneously someone is inflating a balloon inside your skull
Like your eyes are being pushed out from behind.
Except you can’t escape it.
It’s not a headache that comes along, ruins your afternoon and eventually goes away.
It’s there.
Constantly.
And lying down makes it worse
I know. How the actual f**k can it possibly get worse?…But it does
Then there’s the rhythmic whoosh, whoosh, whoosh in your ears, perfectly timed with your heartbeat. Pulsatile tinnitus
When you’re already in that much pain and there’s an inescapable rhythmic noise inside your own head, you genuinely start wondering if this is what madness sounds like
Then your vision starts noping out
IIH can cause papilledema swelling of the optic nerves caused by that increased pressure…which can permanently damage your sight
Mine did.
Everything can look like it’s in soft focus. Your brain tells you the step is there - except it isn’t quite there. Objects aren’t exactly where you think they are. That doorframe? Nope. Shoulda aimed a good 4” to the right, mate
You misjudge things. You stumble. You fall over….I’m now waiting for a 4th operation on my shoulder because I went arse over tit in 2022
So you’re told you need neurosurgery.
And there’s this tiny part of you that thinks: They’re going to fix it!
Except they don’t.
I had a VP shunt fitted in 2014. It did something incredibly important: it stopped things getting worse.
But “stopped it getting worse” and “fixed” are two very different things.
More than a decade later, I still live with the consequences of IIH. I have permanent optic nerve damage and significant visual impairment. The pressure headaches, visual problems and everything that comes along with this condition didn’t magically disappear because I had brain surgery.
And then, after all of that, you get:
“But you look fine!”
Or my personal favourites:
“You don’t look blind” and “How can you do what you do if your blind?!”
I’m still not entirely sure what blind is supposed to look like 🤣
Because that’s one of the difficult things about invisible disability; there often isn’t anything for somebody else to see
You don’t see what I see…or don’t see 😏
You don’t see the soft focus, the distortion or the things that aren’t where my brain thinks they are. You don’t feel the pressure inside my skull. You can’t hear the relentless whooshing in my ears. You don’t see the calculations involved in something as mundane as navigating a step safely.
Sight loss doesn’t have a particular look. Neither does IIH. Or any other hidden disability.
That’s why awareness matters.
Because somebody can look completely “fine” while their body is putting them through absolute hell behind the scenes
IIH doesn’t affect everybody in exactly the same way. My experience is my own. Some people respond well to medication, some require procedures or surgery, and the severity and long-term effects vary enormously
But one thing deserves saying very loudly:
IIH is not just a headache.
So if you’d never heard of Idiopathic Intracranial Hypertension before today…
Now you have 💚💙
And that’s exactly how awareness starts
Please read it.
Please learn it.
Please share it.
Cookies and love to everyone for reading my rather long winded, frustrated rant
🍪❤️🍪❤️
