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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around one eye that persists for three hours.

About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a