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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, 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 appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of 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.

Historical medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

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

Specialists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. 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 calm advisor talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a