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It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks typically start with sudden, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple 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 cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis 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 winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a