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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind one eye that persists up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis 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 episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

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

The disorder were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, 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 increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate treatments.

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 attack since 2016. 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 support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a