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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind one eye that lasts for several hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain 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 accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many 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 official guidelines need updating to reflect a