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It was a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists for several hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a