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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding 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 fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties 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 facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major 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.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a