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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

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 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a