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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family 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 remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a