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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a