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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks 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 children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced 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 pulled because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a