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It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis 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 remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

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

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a