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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain around a single eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 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 note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are handled with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a