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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children 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 remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. 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 reduces nerve activity.

The official guidelines need revising to reflect a