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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding 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 dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a