Cluster headaches: the worst pain imaginable?

We’ve all had a thumping headache at one time or another. It’s irritating and painful, but nothing that can’t be fixed without too much stress. However, about 600,000 Irish people suffer from migraine, an often-crippling headache that makes you want to curl up in a darkened room until it goes away. Worse than this, imagine a searing, brain-ripping headache so excruciating it makes you want to bang your head off the wall and tear out your eyeballs.

Now imagine this headache coming back every day for months on end, sometimes several times a day, until you’re driven beyond demented. This is a cluster headache, also known as Horton’s Syndrome, and it has been described as “one of the worst pains known to man”. It affects four people out of every 1,000, mainly men, severely impacting their quality of life during these episodes and beyond.

Cluster headaches are cyclical, usually coming in bouts lasting for 10 to 12 weeks. After one of these bouts, most grown adults are a gibbering wreck on the canvas. They are known as “the suicide headache”, because sufferers have reported experiencing suicidal thoughts during an attack as a result of the pain.

Peter Murphy (59) began getting cluster headaches 15 years ago. It took him several years to get a proper diagnosis, because many GPs have little or no experience of this rare condition.

“I got this absolutely intense, agonising pain behind my left eye, which then radiated up to the top of my skull and right down through my jaw and into my neck. All on the left hand side. This is a vertical pain – it’s like someone got a hot sword and they’re just pushing it down through the roof of your skull. It went after about 10 minutes, so I thought I must have pinched a nerve in my neck, because I was playing a lot of golf at the time.”

But the headaches came back again after a few months and have been coming back ever since.

"This is what's called a primary headache syndrome," says Dr Martin Ruttledge, a consultant neurologist at the headache and migraine clinic at Beaumont Hospital, which sees about 300 patients with cluster headache. "It comes from the nerves inside your brain. It's a brain disorder," says Ruttledge.

“There’s no etiology known, in other words we don’t know why people get it. It’s only on one side of your head, either the right or the left side. It’s much more common in men – 80 per cent of our patients are men and most of them smoke. So for some reason we don’t know why, male smokers are more prone to this condition.

“Within a 24-hour period you’ll usually get one at night. And people will bang the walls, try and poke their eyes out, try and pull their teeth out, they’re agitated, they’re rocking, they’re pacing and they’re generally trying to self-harm. They’re up, they’re wandering about the house and their partners can do nothing for them. And it usually subsides in about 30, 60 or 90 minutes.”

For some reason, cluster headaches mostly come in spring and autumn, and reach their peak at the equinox. Sufferers might be forgiven for suspecting some evil witchcraft at work here.

“It’s a sleep-related disorder, so it’s probably got nothing to do with the moon, or darkness or the seasons,” says Dr Ruttledge. “The pattern is that you’ll go to sleep at midnight and it’ll wake you at 3am. People are afraid of going to sleep because they know what’s coming next.

“Some people can get one attack in 24 hours and some people can get 10 attacks in 24 hours. This goes on for a period of weeks or months and then they might have nothing for six months or a year or 18 months. That can happen every year for 10 years.”

And they’re the lucky ones. For 10-20 per cent of cluster headache sufferers, the condition can move from episodic to chronic, meaning sufferers are hit by cluster headaches all year round, with no gaps between bouts. For chronic sufferers like Peter Murphy, the torture never ends. “Since turning chronic, I’ve not had one totally pain-free day in about four years, not a single 24-hour period.”

Cluster headaches seem to be impervious to pain-killers, which makes them more difficult to treat – and makes life more unbearable for sufferers.

“Paracetamol doesn’t go near it. Morphine won’t touch it. No painkillers will touch it at all,” says Murphy. “For months and months I was on these things called Kapake, paracetamol plus 30mg of codeine. Now to put that into context, one Solpadeine has 0.8mg. I was eating these like Smarties and still no relief.”

The bad news is that cluster headaches are incurable, but the good news is that they can be treated and, with help from their headache specialist, patients can manage their attacks and get up to 80 per cent of their quality of life back, says Dr Ruttledge.

Triptans are a group of drugs that have proven effective in treatment of cluster headaches. An injection of Sumatriptan can reduce the pain within 10 minutes during an attack. Oxygen also helps, and Murphy finds high doses of vitamin D3 to be very effective. He also finds relief from using a GammaCore, a handheld device that sends an electrical impulse through the vagus nerves at the side of the head. Most sufferers and medical experts agree that the biggest trigger for cluster headaches is alcohol. The advice is to stay away from alcohol during a cluster period.

One thing that medical staff don’t often acknowledge is the mental toll cluster headaches take on sufferers and their families, says Murphy.

“When I first got them, my daughters would have been about 14 or 15 at the time, and they and my wife spent years worrying that I had a brain tumour or something, so you don’t understand the effect they’re having on the people closest to you. Once or twice they got into a terrible state because I was kneeling down on the kitchen floor crying like a baby – no teenage girl should see their father like that. They were worried sick.”

Murphy had to take early retirement, but he’s still managing to find some pleasure in life through the pain. “For me personally, I’ve been accused of being a ridiculously optimistic person. I’m upbeat most of the time. Okay, sometimes I get really sick and tired of it, but I’ve been very lucky. I have a very supportive family, very supportive employers. There are some people who do not have either. They’ve lost both family and job.

“I still hit a golf ball, I can tell you. There are some things that nothing gets in the way of.”