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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties 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 described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, 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 sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of 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 official guidance need updating to reflect a