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It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. Then came quick stabs, like lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects 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 discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “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 dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists 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, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a