This post is for all those out there looking for answers, for those who are confused and for those looking for comfort after getting a diagnosis that brings little comfort.
I have a condition called paroxysmal hemicrania. As well as a fantastic tongue twister, this rare condition is where you get a particularly nasty headache which comes in shots of short pain in one side of your head. Headache seems like an insignificant word when describing the condition, when I’m ill, I usually call them headache attacks because that’s what it feels like. It feels like your brain is being attacked from all sides with very little way of defence.
Let’s go back to the beginning. It’s December 2013, a few days before Christmas. I start noticing a very occasional pain in the right side of my head. It’s not like any headache I’ve had before, it’s short but extremely painful. I take ibuprofen in the hopes of warding it off. I make it through my shifts at work and head home for Christmas without much fuss. I tell my mum of the pain and we both dismiss it as just a particularly painful headache. Come December 27th, I have my first full blown attack. I’m up early, getting ready to head back to Sunderland for my last shift at my Christmas job. I’m in the shower when the pain hits me like a ton of bricks. It was too much and next thing I know I’ve blacked out in the shower. I manage to get out with help from my mum and try and blurt out that the pain’s back. It’s not just going away however. Due to the other symptoms I was showing; stiff neck, severe rash and temperature, I was sent to hospital with a meningitis scare. After a lot of tests including one which meant I got a needle in my spine, meningitis was ruled out. However, a week later I’m still getting these pains. It’s coming in waves, I have real trouble dealing with any kind of light and my heat rashes are coating the entire right side of my face and neck. I go back to the doctors in hope of some sort of relief. The doctor I see is as baffled as those at the hospital but takes a guess. He gives me a new painkiller and tells me if this works, you have paroxysmal hemicrania. The painkillers worked thankfully and that gave us a diagnosis.
I do feel incredibly lucky to have a diagnosis so quickly. Due its rarity, it can take people years to be diagnosed. Looking back now though, I also wish I’d had meningitis. Unfortunately this is no one off.
One of my favourite things to distract myself is coming up with metaphors and similes for the pain. It’s also handy when describing what you have to other people. My current favourites are:
My brain is be grated on either side.
It feels like my head’s being boiled alive.
My brain’s turned into overcooked scrambled egg.
It’s like someone’s punched you in the face and your head’s on fire.
Over the last few years, I’ve had attacks at varying levels of pain and varying lengths of time. Sometimes I’ve just needed to sleep it off for the day with minimal painkillers. Other times I’ve been living in my pyjamas for weeks on end, taking a pharmacy’s worth of pills and barely being able to wash myself without help. Curling up in a ball is a small luxury in these moments. I’ve ended up in hospital waiting rooms leaving every health professional completely baffled when I tell them what I’ve got. Usually you can take comfort in a doctor knowing what they’re talking about, in my case not so much.
In the past, attacks could cause an interruption in my life that lasted a month at most. I was diagnosed with the episodic version of my condition, so I’d have periods of remission. Right now, I’m coming to the realisation that my condition is no longer episodic but chronic. I’m also in the midst of being diagnosed with another condition which is set off by PH, but rather than in my head I get pains in my jaw, neck and ear. I started a new job in April and after two weeks of training I got an attack. This lasted around three weeks but it hasn’t really ended. Since my return I’ve still had bad days where the pain is too much and I can’t physically handle it so all I can do is sleep. I’m having to come to the realisation that there isn’t much I can do but hope my painkillers work for the day and I can make it through my work. Those are the good days and it’s so important to enjoy them.
Today was a good day. Today the pain was manageable. Today I got to bake muffins and see my best friend and write this blog. Even in the midst of a full blown attack I might get a couple of hours where I don’t need feel like screaming in pain. I’ll try and tidy or watch my favourite film which requires concentration.
If you get diagnosed with this condition, I know this blog might be a depressing read but I think the best approach is to keep positive. That’s always going to be easier said than done. With me, I try best to keep a sense of humour. Coming up with silly names for symptoms or making stupid jokes with a brain of putty is sometimes enough to encourage a hint of happiness in a heap of pain. Make sure you have support around you, I don’t know what I’d do without my mum or my friends. I’ve also found chatting to people online with the same condition weirdly comforting, rare conditions can be isolating so it’s good to know you’re not the only one. If you’re looking for someone to talk to, I’m here to answer any questions. This post might be a lot to take it, if anything I just needed to vent. It’s important to have a release, I’m lucky in that I’ve found mine. Anyone out there in this situation, find your release.
Don’t let the pain win and appreciate the good days.