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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came quick stabs, similar to electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and men are more often affected. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of 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 hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with infrequent episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. 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 reduces nerve activity.

The official guidelines need revising to reflect a