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It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe pain behind one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches usually begin with sudden, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes 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 condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

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

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are managed with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a