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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind one eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with sudden, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure 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 hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a