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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran 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 once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, 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 twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a