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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe pain around one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. 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 concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks 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 family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. 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 reassuring advisor talked me through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a