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It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father 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 hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a