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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that peaks within minutes and lasts for up to 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 occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly disliked 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 incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

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

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a