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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize 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 paralysis caused by the worst episodes. “It robs you of the small 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 across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go 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 has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a