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It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically start with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. 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 reduces nerve signals.

The national guidelines need updating to reflect a