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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation 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 described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

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

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, 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 pain is that reduces nerve activity.

The national guidelines need revising to reflect a