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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, 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 routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

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

About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, severe agony around one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support 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 clerical work after relocating, but often hid 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 failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 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 recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a