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It was a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my right eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major 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 ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent 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 deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a