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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found 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 the early 2000s at a national neurology center.

Still, the inability to organize life around erratic attacks took its effect. She especially hated 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 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 facility.

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Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster headache. 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 formally classified by international medical societies in 1988. From the mid-20th century to the late 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 note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult 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 pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a