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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, 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 arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its effect. 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 most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. 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 most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a