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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks typically start with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading experts in treating the disorder note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. 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 cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a