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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came rapid stabs, like electric shocks. 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 activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around one eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient healing texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms 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 four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a