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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with occasional attacks 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 nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a