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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her 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 misinterpreted her pain. She thinks the dental profession still need greater 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 early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

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

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a