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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed 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 hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small 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 throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed 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 thought to be caused by a problem with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping 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 unsuitable 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 recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a