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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by rapid jolts, like lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. Four 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 agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a