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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came rapid jolts, like lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around one eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing 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 triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, 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 discomfort is that reduces nerve signals.

The national guidance need updating to reflect a