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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came rapid shocks, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially 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 that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her 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 symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy alone. More prolonged or more intense 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 procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a