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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties 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 facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. 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 brain. Leading specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks 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 circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication 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 updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a