by Lucy Peck<\/p>\n
You may read the words Cluster Headache and think \u201cI bet that\u2019s like a migraine or sinus headache<\/em>\u201d but Cluster Headache and the truly severe extent to which it affects people is commonly misunderstood. \u00a0Not all disabilities are immediately obvious. \u00a0There are many non-visible disabilities and it\u2019s all too easy for people to make snap judgements and not realise the adjustments required. \u00a0You cannot always see what has led someone to need the priority seats on the bus or parking close to the building. \u00a0I want to take this opportunity to explain one such non-visible disability.<\/p>\n 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. \u00a0It can begin at any age and is a lifelong condition.<\/p>\n The pain has been described by sufferers and leading neurologists as one of the most severe pains known.<\/p>\n The medical term \u2018headache\u2019 is something of a misnomer. \u00a0While 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.<\/p>\n Unlike with migraine, Cluster Headache sufferers are unable to lie down or remain still during an attack. \u00a0They will pace around or rock violently back and forth.<\/p>\n There are two types of Cluster Headache, Episodic and Chronic. \u00a0An Episodic sufferer has recurring periods of these agonising attacks happening every day for weeks or months at a time. \u00a0The condition then goes into remission for a period and there can be months or even years free from pain. \u00a0A Chronic sufferer does not have remission periods and can experience these daily attacks of pain every day, month and year. \u00a0Cluster headache, even in its episodic form, is a disability under the law.<\/p>\n 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). \u00a0However, the condition is not well known and many sufferers are struggling on alone with no adequate diagnosis or treatment.<\/p>\n It\u2019s 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. \u00a0They very often have a long and stressful journey to get the right diagnosis and treatment.<\/p>\n Even if you know someone who suffers from Cluster Headache, it is likely that you have never seen them at their \u2018worst\u2019, suffering an attack. \u00a0Some (Many?) sufferers, myself included, put a lot of energy into trying to provide an appearance of managing. \u00a0We continue to take our children to school and attend to our responsibilities in the aftermath of another disrupted night of attacks. \u00a0The attacks can leave us drained, confused, and depressed. \u00a0There is also a level of anxiety involved in travelling anywhere, \u201cwhat if I have an attack? Is there somewhere private to take my medication?\u201d<\/em><\/p>\n How can I help? <\/strong><\/p>\n Whilst the support each individual needs is specific to them, we would recommend being understanding, not belittling, or diminishing the pain levels experienced.\u00a0 \u201cOh, I had one of those once<\/em>\u201d is a particularly unhelpful although well intentioned statement to make. \u00a0Instead, just ask what you would of anyone who is suffering, \u201cwhat can I do to help<\/em>?\u201d.<\/p>\n