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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically begin with abrupt, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a