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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came quick jolts, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly disliked 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 worst episodes. “It robs you of the small 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 throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks 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 pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute therapy only. Longer or more severe bouts 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 procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a