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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began 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 symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky 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 absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

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 attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a