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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long 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 pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis 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 remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer 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 them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a