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It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came rapid shocks, like electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that lasts up to three hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value 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 documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially classified by global headache societies 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 that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a