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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. 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 paralysis caused by the worst episodes. “It steals from you of the simple 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 facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays 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 proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a