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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang 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 worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, 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 fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a