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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms 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 portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day 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 thought to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, 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 tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired 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 activity.

The national guidance need revising to reflect a