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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes 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 her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured 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 reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a