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November 21, 2023

Cluster Headache: Not just a headache

by Lucy Peck

You may read the words Cluster Headache and think “I bet that’s like a migraine or sinus headache” but Cluster Headache and the truly severe extent to which it affects people is commonly misunderstood.  Not all disabilities are immediately obvious.  There are many non-visible disabilities and it’s all too easy for people to make snap judgements and not realise the adjustments required.  You cannot always see what has led someone to need the priority seats on the bus or parking close to the building.  I want to take this opportunity to explain one such non-visible disability.

Cluster Headache is a rare neurological disorder estimated to affect under 0.2% of the population. Sufferers have daily attacks of excruciating pain centred around one eye, between one and 8 times a day. Each attack can last from about 45 minutes to three hours, often at the same times of day and night. The attacks frequently occur at night and sufferers will be awakened within a couple of hours of falling asleep. The cause of Cluster Headache is not known.  It can begin at any age and is a lifelong condition.

The pain has been described by sufferers and leading neurologists as one of the most severe pains known.

The medical term ‘headache’ is something of a misnomer.  While sufferers do experience piercing or stabbing pains on the affected side of the head, the worst of the pain is normally concentrated in the eye on the affected side, often radiating down into the cheek, ear, jaw and upper teeth.

Unlike with migraine, Cluster Headache sufferers are unable to lie down or remain still during an attack.  They will pace around or rock violently back and forth.

There are two types of Cluster Headache, Episodic and Chronic.  An Episodic sufferer has recurring periods of these agonising attacks happening every day for weeks or months at a time.  The condition then goes into remission for a period and there can be months or even years free from pain.  A Chronic sufferer does not have remission periods and can experience these daily attacks of pain every day, month and year.  Cluster headache, even in its episodic form, is a disability under the law.

It is estimated that there are around the same number of Cluster Headache sufferers in the UK as there are sufferers of Multiple Sclerosis (MS).  However, the condition is not well known and many sufferers are struggling on alone with no adequate diagnosis or treatment.

It’s not unusual for them to be misdiagnosed for many years and wrongly treated for conditions such as migraine, sinusitis, ear infections, neuralgia, eye or dental problems.  They very often have a long and stressful journey to get the right diagnosis and treatment.

Even if you know someone who suffers from Cluster Headache, it is likely that you have never seen them at their ‘worst’, suffering an attack.  Some (Many?) sufferers, myself included, put a lot of energy into trying to provide an appearance of managing.  We continue to take our children to school and attend to our responsibilities in the aftermath of another disrupted night of attacks.  The attacks can leave us drained, confused, and depressed.  There is also a level of anxiety involved in travelling anywhere, “what if I have an attack? Is there somewhere private to take my medication?”

How can I help?

Whilst the support each individual needs is specific to them, we would recommend being understanding, not belittling, or diminishing the pain levels experienced.  “Oh, I had one of those once” is a particularly unhelpful although well intentioned statement to make.  Instead, just ask what you would of anyone who is suffering, “what can I do to help?”.

Individuals who suffer from Cluster Headache can find support with OUCH (UK) the Organisation for the Understanding of Cluster Headache.

OUCH (UK) has been kind enough to provide information to assist in the writing of this.