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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. 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 took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple 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 portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a