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It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, 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 liberties we don't value 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 described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a