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It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around one eye that reaches its peak within minutes 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 facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

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 daily at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a