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It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around one eye that persists up to three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked 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 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 documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a