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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around one eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as 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 sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a