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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. Then came rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain behind a single eye that lasts for three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily 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 cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes 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 symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally 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 concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache 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 which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, 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 decreases nerve activity.

The official guidance need revising to reflect a