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It began on 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 erupted behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated 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 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 described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe 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 side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a