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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent 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 ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

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

Still, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised 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 issue with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a