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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, 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 global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. 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 adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer 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 cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a