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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came rapid jolts, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. 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 tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe pain around one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to organize life 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 children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international headache committees 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 head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a