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It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid shocks, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists for three hours.

About one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks typically start with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. 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 deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many 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 activity.

The national guidance need updating to reflect a