"The Head Ache" by George Cruikshank (Image via)
Imagine waking up in the middle of the night and feeling a drill in your eye. This is not a metaphor. Imagine feeling like somebody has pierced a hot metal rod through your neck and rammed it up into your brain. Again, this is not a metaphor. This is what a cluster headache feels like.
Cluster headaches are also known as "suicide disease", as sufferers have been known to take their own lives when they can't bear the pain any longer. The condition affects 0.1 percent of the world's population, and I'm in that exclusive club – a 27-year-old woman who's had to learn to live with the syndrome.
I had my first crisis at 17. From the very first moment I knew it wasn't a normal headache – mainly because I'd never felt pain remotely like it, centred around my left eye and extending to my ear, my teeth and from the nape of my neck and beyond. In advanced stages it hurt to touch my own face. It was the kind of intense physical agony that could drive you to despair incredibly quickly, not helped by the fact I had no idea what was happening to me.
That's how I lived for two months, a victim of a pain that plagued me daily at 20-minute intervals. I ended up in the ER every day, but the pills they gave me may as well have been Tic Tacs – doctors couldn't do anything to ease the torture; I just had to wait for it to subside naturally.
My family was devastated by this first outbreak and how it weakened me, both physically and psychologically. I don't remember much of this stage as my mind has always had an innate tendency to remember the good and forget the bad (generally a big plus for me), but I do remember hitting my head against the wall, crawling along the floor and threatening to jump out the window.
It wasn't until my second outbreak that I found an effective form of pain relief. By that time I'd left home and was living in Rota, a town in Andalucia, working in real estate. I'd take migraine pills whenever the pain came back, but ultimately they turned out to be a very expensive waste of time – two tablets at £10 a pair had little to no effect whatsoever.
One day, I wound up in an emergency room, expecting to hear the same bullshit I'd heard so many times before (from "Migraines are bad, but you shouldn't get so worried," to, "Have you tried putting a lemon on your head?"). However, this doctor was different.
"Would you mind if I put you on oxygen?" he asked. Understandably, I assumed he was taking the piss, so laughed it off and told him to inject me with some proper medicine. Instead, he placed an oxygen mask over my face and started walking out the door, saying, "See you in 20 minutes."
There was no need to wait that long; eight minutes later, the pain was gone. When I asked him about it, the doctor said he'd had another patient like me – a man of about 40 who described the same type of pain and suffering from cluster headaches. This doctor had dedicated his spare time to researching the man's symptoms and had come to the conclusion that oxygen could be more effective than a painkiller.
Since then, every time the pain's come back I've returned to that small clinic in Rota, where my doctor / saviour prepares my oxygen and brings me back to life. I'll never live long enough to thank this man for what he's done for me.
"The Cluster Headache" by JD Fletcher (Image via)
The outbreaks I endured between the ages of 19 and 26 usually came once a year and lasted from between three weeks to two and a half months, including contraction periods.
I hated seeing myself as a sick person, which is maybe why I never identified as one. To write openly about the condition, as I'm doing now, would have been absolutely unthinkable for me back then; I hated the thought of people pitying me, so I never told anyone what was going on.
I also never visited any online forums, because – imho – reading online forums for sick people is, without a doubt, the quickest way to fool yourself into believing you have all sorts of other problems. However, my mother began visiting forums for cluster sufferers in order to find potential therapies, cures and tips.
She recently recounted their stories to me; how their Facebook feeds were full of photos of them holding oxygen bottles; how they all had the same profile picture (a teddy bear with an amputated eye); and how they'd let each other know that "the beast" (the headache) had visited them again. Some were on leave from work and struggling because society seemed unable to take care of them. I don't judge or pity them, but my own experience was entirely different to theirs, and I thought it was important to share that knowledge in a public forum.§
During my outbreaks – which were usually in the summer for some reason – I would party day in, day out. I'd go to the pool, the beach, the hairdresser (risking hair pulls) and help with odd jobs that people asked of me. I even remember injecting myself with painkillers in a nightclub bathroom.
Helpfully, by that point I'd learned to recognise the symptoms of an outbreak ten minutes before the onset, which would give me about 10 minutes to get myself into a taxi towards oxygen treatment. Since I got my own bottle of O at home my life has changed; I no longer depend on hospitals – I can fix myself on my own.
A far cry from how I acted during my period of teenage stubbornness, I now tend to stay at home when I have an outbreak. Not out of fear, but because it really is more comfortable to stay close to my tank.
Although it sounds unlikely, despite all the setbacks I believe that cluster headaches have been a great asset to my life. Surviving such severe pain can bolster your confidence, and – as cliched as it sounds – each outbreak makes me value my life a little more.
If you, or someone you know, identifies with my story and didn't know what was happening to you until now, don't hesitate to contact me. I'll share tips that help me manage the pain and sometimes even make it disappear.
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