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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around a single eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a