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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe 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.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches 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 circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? 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 sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But leading neurologists 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 dictates the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a