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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a