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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Attacks usually start with sudden, 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 several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple 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 facility.

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

Historical medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

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

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a