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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of long symptom-free periods.

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

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

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

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical texts propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, 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 reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a