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It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that lasts for several hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a