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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain behind a single eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children 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 attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me 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 medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a