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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came quick jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain around one eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation 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, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a