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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came rapid shocks, like lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a