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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort around one eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack 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 antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache 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 blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more intense 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 cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a