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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. Then came quick shocks, similar to electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

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

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a