Tina Edgar, 56, places her hand on her temples during the initial phase of a cluster headache attack. Credit:Marta Pascual Juanola

Despite being one of the world's most excruciating pains, cluster headaches are extremely underdiagnosed and incredibly misunderstood, leaving patients to fend for themselves.

Normal text size Larger text size Very large text size They feel like a red-hot steel rod is wedged in your eye socket, a pain so unbearable some bang their heads on the wall. Cluster headaches are a rare condition affecting 0.4 per cent of Australians, who are often left to fend for themselves. Despite being among the most excruciating pains in the world, the so-called 'suicide headaches' remain largely unknown, underdiagnosed and misunderstood. Every few weeks, Mirrabooka local Tina Edgar will get a warning, "shadows" as she calls it, that a cluster headache is coming. It often comes in the form of a mild headache, nausea or little electric shocks inside her head. When the shadows come, she knows she only has a few minutes to find find a quiet spot before the pain strikes. In a well-established routine, the 56-year-old will lock herself in her room, sit on an armchair and wait for the pain to take over. In a matter of minutes, she'll be in such extreme pain that she will start rocking back and forth, tapping her arms with a ruler to defuse the pain, her fist shoved in her mouth to prevent her from screaming.


Other times, she will pace up and down the room or bang her arms on the wall. Once, in the height of an attack, she pleaded with her husband to hit her in the head, which he refused to do. Attacks are completely unpredictable. They can come after weeks of absence but when they strike, they take over Ms Edgar's life, sometimes for months. "You almost become reclused," the mother of six said. "Everything you do, everything you plan has to revolve around it." Ms Edgar is a chronic sufferer of cluster headaches. Credit:Marta Pascual Juanola Cluster headaches are a chronic condition which affects predominantly men believed to be caused by a disorder of the hypothalamus, a small part of the brain located at the base of the head responsible for regulating hormones, emotions and body temperature. The condition usually develops between the ages of 20 and 40 and although there are several ways of managing the symptoms through oral medications, nerve blocks, oxygen and steroids, no cure has been found yet, leaving patients like Ms Edgar deeply frustrated.


"Sometimes I just wish it would stop," she said. "They can give you certain drugs but there's nothing they can do." I've had six children, I've delivered them naturally, but nothing is like this. Tina Edgar, 56 Like Ms Edgar, Mandurah fly-in fly-out electrician Colin Taylor can feel a niggle before the pain is about to start, but his headaches are seasonal, meaning he remains pain-free several months a year. The father-of-three has suffered from cluster headaches for nearly two decades but was only diagnosed by chance during a visit with a sports therapist seven years ago. During his latest cluster, Mr Taylor spent Christmas Day locked in a Panamanian hotel room, after being kicked out of his flight home in the midst of an attack. He manages the pain with prescription painkillers but nearly a decade post-diagnosis he is unsure about whether they even work.


"You take something and your pain goes away and you think that's great, but then you can not take a drug and it can go away," he said. "Is it working? I have no idea because I still get the terrible pains. You just hope it does. "I'd love to have more research in it but I understand that there are so many worse things than this. It is horrible when you get it but it's only for 40 minutes or so." Mandurah electrician Colin Taylor. Credit:Marta Pascual Juanola Mr Taylor said his condition has caused fall-outs with friends and social isolation. It has also placed a burden on his family. "Plenty of times I've been clutched in my room screaming and people know I've suddenly had to lock the door to keep them out, and then after 30 or 40 minutes you come outside, sit down and have a beer with them," he said. "They just don't understand how you can go through that and then come out."


Both Mr Taylor and Ms Edgar are waiting for a magic bullet that will take their pain away. I hate the idea of falling asleep because that's when I get the worst ones. It doesn't matter how many drugs you take, it's so far into it that you've lost it. Colin Taylor, 58 While other 'clusterheads', as sufferers call themselves on internet forums, have reported the positive benefits of a strict diet rich in vitamin D and medically supplied oxygen, researchers are yet to find a blanket approach. Dr Peter Goadsby, a neurologist specialising in headache disorders based in the King's College of London, said most patients responded to acute treatments designed to abort attacks such as sumatriptan injections and oxygen. But he said others struggled with preventative treatments. That means when painkillers don't cut it, patients like Mr Taylor and Ms Edgar are often left to find their own mitigation methods, some turning to illicit substances like LSD and magic mushrooms to get relief. For Dr Goadsby the use of those substances is not surprising. They both have a similar chemical make-up to methysergide, a drug used in the 1950s to treat the condition, which showed promising results.

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