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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind one eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had 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 responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a