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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts up to several hours.

Approximately 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 a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the late 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 released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a