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It was a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes 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 childhood. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout 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 victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a