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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. Then came quick shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a