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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain behind a single eye that persists for three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks 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 associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after 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 recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international 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 supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent 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 the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a