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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid shocks, like electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

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

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms 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 throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

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

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a