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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, 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 slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging 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 treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a