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It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick jolts, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient 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 put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She especially 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 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 recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain 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, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a