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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. 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 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 remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a