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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 class, when a sudden sensation erupted behind my one eye. Then came quick stabs, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left 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 repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. 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 family during the incapacitation caused by the worst episodes. “It steals from 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 episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started 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 finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a