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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came rapid stabs, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known 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 length of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a