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It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. Then came rapid shocks, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort around a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. 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.

Nevertheless, the failure to organize life around erratic pain 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 children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a