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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. 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 bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block 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