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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “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 her youth. Drinking in her teens, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found 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 2002 at a national neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity 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, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her 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 misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are managed with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a