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It was a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind a single eye that persists for three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, 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 steals from you of the small freedoms we don't appreciate 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 the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical medical texts suggest unusual treatments for what modern observers would classify 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 cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing 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 headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition 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 pulled because dentists misinterpreted her pain. She thinks 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 early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a