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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid 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 attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving 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 father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, 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 colleague, and even having to be cared for 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 episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose 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 including herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century 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 treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When another patient 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 guided me through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a