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It began on a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing 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 lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation 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 amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began 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 deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent attacks are managed with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a