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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally 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 relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms 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 documented throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a