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It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky 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 diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls 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 first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity 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.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts 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 skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a