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It began on a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, 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 late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks 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 periodic cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several 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 interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. 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 family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies 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 “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a