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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. It was followed by quick stabs, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began 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 symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

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

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a