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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that persists for several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a