98% of people with symptomatic Chiari agree that they they have pain.
Because this is usually classed as a ‘headache’, it can be hard to diagnose. After all there are lots of conditions that have ‘headaches’ as a symptom.
In my case, for 5 years I’ve been trying to find someone who can confirm my instincts; that the pain I experience is connected to my Chiari Malformation.
Sharp, dull, stabbing, throbbing, burning, pulsating, rolling pressure…
I experience all kinds of layered, nuanced pain.
From tiny explosions to burning knitting needles,
from feeling like I’m carrying a sack of burning coals on my head, to an ache across my eyes....
most days it’s like Edward Scissorhands is trying to remove my head, very, very slowly.
I have had migraines and headaches my whole life, but this, is a whole new ball game. It just started one day in 2014. I was drying my 2 year old, after her bath. I’d been feeling off for weeks, maybe even months, but put it all down to sleep deprivation. The year before I’d even been in hospital with random fainting episodes. I still believed in the power of God and coconut oil at that point, so hadn’t investigated that far.
This pain was something next level. The next day I lathered up in voltaren emugel, took whatever drugs I could find, and went to my job, barely moving and very tentative.
This was the start of a long journey of trying to understand what had happened, and why it wasn’t getting better. I remember thinking after 1 week, how horrible and trapped I felt. Little did I know that I had years more of it to come.
It takes different shapes, the pain. Some days its like a familiar wet flannel that’s just a little too hot on the back of my head. Other days it’s like the devil is standing behind me, heating up rusty knitting needles, and jabbing them in between my skull and my neck, as he laughs and twirls his tail.
The thing that gets me, is calling it a headache. I know we need a name for all the pain that goes on in heads.
I’ve seen way too many health professionals saunter their way through the door, sit down and say “I see you’ve been having headaches” it makes me want to scream… ”THIS IS NOT A FUCKING HEADACHE!”
But, this is not a happy advertisement, where a lady smiles and takes a couple of panadol and gets on with her day. This has been so far beyond a headache that at times I’m certain my life is being shortened, if not immediately snuffed out.
If I am on a long flight and fail to wake from my sleep before descent..
It genuinely feels like I’m going to die.
It’s the worst possible pain, maybe even worse than childbirth, and thankfully it’s only happened twice. The first time I’d just forgotten some chewing gum on a flight to Melbourne, and didn’t have anything to move my jaw. I had no idea about my condition at that point, and was very taken aback at the ghastly, prickly, wrecking balls smashing around in my head. I held my face crying and weeping at the unbearable pressure and pain. Since then I have been so diligent about chewing gum on descent, but recently on a trip to Beijing I fell asleep. And I woke to a million hot needles and another atomic bomb in my head. I was thinking I should call someone, but I couldn’t even do that. It subsided, but it shook me so much. I was terrified.
I’ve had headaches. This is not just a fucking headache.