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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that persists up to three hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. 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 her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from 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 throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a