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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity 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, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a