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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a