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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on a single 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 tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen 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 consultant specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a