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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, 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 small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a