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It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick jolts, like electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks typically start with sudden, severe agony around one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, 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 broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient 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 deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst 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 portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records propose bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

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 recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more 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 talked me through oxygen therapy and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a