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It was a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came quick shocks, like electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily 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 chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode 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 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical records suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a