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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 group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E 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 episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

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

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a