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It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October 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 agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain behind one eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a