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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family 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 winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the results of a research project for which they had induced 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 responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a