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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her parent 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, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications 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 side of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a