We’ve all experienced some form of headache at one time or another. Maybe we’ve had too much coffee, not enough water, or the sinuses are playing up after a cold.
But cluster headaches are in a whole other league of pain. Women sufferers describe an attack as comparable to the pain of childbirth and around half of sufferers have to give up full time work to try and manage their condition. Some sufferers have even committed suicide, so intense is the pain of an attack, giving the condition the unfortunate name of the ‘suicide headache’.
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What are they?
Cluster headaches are usually concentrated on one side of the head, and last between 15 minutes and several hours. They often wake people from sleep and sufferers tend to experience three to twelve attacks during an episode. One in every 1,000 people in the UK is affected – children and adults alike – and the pain is so severe that sufferers are often driven to wailing or groaning during an attack, sometimes banging their heads against the wall or pacing the room.
Around 85 per cent of sufferers have episodic attacks, where they are affected for three to four months of the year. But the remaining 15 per cent are chronic sufferers, and have to put up with attacks almost every day of their life.
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What is the cause?
Cluster headaches are more likely to occur in the autumn months, but medical experts have not yet pinned down why. Some research suggests that cluster headaches are caused by a malformation of the hypothalamus – part of the brain that links the nervous system to the body’s glands. But while migraines and other headaches can often be attributed to a specific cause, the frustrating thing for sufferers of cluster headaches is that no specific cause has been identified.
How are they treated?
While it is a severely debilitating condition, cluster headaches are not life-threatening and can be relieved with an injection of sumatriptan, which clears the attack within a few minutes, or with oxygen therapy – both of which are available on the NHS.
However, the injections can only be taken a few times a day, and a reliance on oxygen can confine sufferers to home. Sufferer Val Hobbs has had to give up her job as a legal secretary because of the condition and despite managing attacks with oxygen and injections, it remains a constant challenge. She says: “We [sufferers] have to think in advance, make sure we have the meds with us, make complicated arrangements if we are going abroad.”
“We live with the constant fear of knowing that an attack will happen, but with no idea of when, where, how long, or how intense it will be.”
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Despite the severity of the condition, one of the biggest challenges to many sufferers is getting diagnosed in the first place. Many complain that GPs fail to recognise their description of the agonising attacks, thinking that they have migraines and, according to Mike Pollock, chairman of the Organisation for the Understanding of Cluster Headaches, Ouch, there is not enough awareness of the condition: “GPs just think it’s another headache. It can take up to four years to get a diagnosis.”
Ms Hobbs suffered attacks from the age of ten, but wasn’t diagnosed until the age of 51, by which time she was a chronic sufferer: “For years I had been told it was pre-menstrual migraine, post-natal migraine, post-menopausal migraine, sinusitis, or deviated septum.”
As a result, many sufferers rely on online forums such as Ouch or the US-based Cluster Busters for advice and moral support, and these patient groups are a good starting place for those who suspect they might have had an attack.
The good news for sufferers is that a new treatment could be in the pipeline. Gamma-core, which works by stimulating the nervous system, is currently being tested and developed to gauge its effectiveness in treating cluster headaches and according to Mr Pollock, the results have been very promising.
If successful, it could revolutionise the lives of the thousands of people who have had to live with the incurable condition – and it is also considerably cheaper to produce than sumatriptan injections. Until then, sufferers are advised to seek help from their GP, insist on seeing a specialist neurologist if they feel they are not getting the correct treatment – and not to suffer alone.