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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started 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 her youth. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found 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 diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, 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 steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man'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 underwent four operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a