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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class 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 intense discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple 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 antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical 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 key artery that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a