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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain behind one eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs 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 throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a