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It was a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation erupted behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased 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 appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

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

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a