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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About 1 in 1000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

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

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

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a