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It began on a overcast Monday in the 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 one eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for 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 winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient medical texts propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a