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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain behind a single eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense 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 thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results 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 major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a