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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came rapid shocks, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe agony around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She particularly 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 paralysis 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 recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur 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 disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a