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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky 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 liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

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

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

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

But consultant neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a