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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that persists up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook 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 office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining 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 description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a