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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating pain around 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 red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: 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 redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. 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 reduces nerve activity.

The official guidelines need updating to reflect a