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It was a dreary Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. 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 found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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

Historical medical records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis 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 eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition 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 education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a