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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis 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 major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up 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 severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult 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 misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a