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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes 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 symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children 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 winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are managed with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a