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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown agony in class 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 severe discomfort around a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache 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 brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a