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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Four 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 tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, 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 patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a