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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a