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It was a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by rapid shocks, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated 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 adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a