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It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain 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 headache disorder.

This condition typically begin with severe discomfort behind one eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient 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 deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent 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 fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a