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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the 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 shower, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small 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 facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a