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It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. 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 took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning 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 first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, 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 extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a