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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. It was followed by quick jolts, like lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

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

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally 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 clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired 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 discomfort is that reduces nerve signals.

The official guidance need revising to reflect a