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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation 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 neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind one eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. 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 took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, 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 co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of 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 believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a