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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my one eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. 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 condition worsened through her youth. Drinking in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially 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 most severe episodes. “It steals from 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 episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers 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 remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a