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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain 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 incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated 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 symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, 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 twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a