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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky 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 small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a