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It was a overcast Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. 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 late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around one eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. 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 early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a