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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started 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. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, 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 agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a