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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize 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 robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. 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 activity.

The official guidelines need updating to reflect a