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It was a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. Then came quick jolts, like electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a