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It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. This was followed by quick stabs, like electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began 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 childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support 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 office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a