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It was a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international 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 key artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, 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 A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with occasional attacks are handled with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a