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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties 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 portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

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

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a