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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, 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 dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. 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 small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a