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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually 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 relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked 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 incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first 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 evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a